February 28, 2025 • 50 mins
Kim, a passionate advocate and mother, shares her incredible journey of adopting two daughters, one of whom faces the challenges of an ultra-rare brain condition known as Linspad syndrome. Through personal trials and triumphs, Kim has emerged as a formidable voice in the advocacy space, particularly with her work at the Child Neurology Foundation. Explore how Kim has become a beacon of hope, leveraging her unique experiences to connect families with crucial resources and create a supportive community, all while emphasizing the importance of clinical trials and the limitations of insurance coverage for breakthrough therapies.
The Child Neurology Foundation's extensive network of 25,000 social service organizations is a lifeline for families navigating neurological conditions. Discover the array of tools and resources offered, such as transition of care toolkits and seizure action plans, aimed at providing comprehensive support. Mental health education for caregivers is a critical component, empowering them with strategies to manage the unique challenges they face. By transcending financial barriers and providing essential services like free flights and accommodations for specialist appointments, the foundation demonstrates its unwavering dedication to each family's journey.
Family involvement in clinical research plays a pivotal role in shaping effective therapies, and Kim's experience on a parent council for a clinical trial underscores this point. The conversation highlights the evolution of decentralized clinical trials, which bring flexibility and engagement by conducting trials in non-traditional settings. The value of building community connections, especially in rural areas, is also examined. By sharing insights and fostering collaboration across various fields, Kim and the Child Neurology Foundation illuminate the path toward impactful, patient-centered treatments, while emphasizing the importance of reaching out for support when needed.
- Email: Programs@childneurologyfoundation.org
- Website: https://www.childneurologyfoundation.org/
- Fill out an assistance request form to get support:https://www.childneurologyfoundation.org/family-suppo
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters.
Today I am thrilled tointroduce our incredible guest.
This is Kim, seasoned advocatewith over 18 years of experience
supporting children withspecial healthcare needs and
their families as a dedicatedmom raising children with unique
needs herself.
Kim's personal journey fuelsher deep passion and commitment
(00:25):
to this work.
In her current role at theChild Neurology Foundation, kim
oversees a network of over 80advocacy organizations, bringing
social and emotional support tofamilies.
She's also been instrumental inclinical trial advocacy and
patient engagement,collaborating with researchers,
clinicians and even the FDA toensure families and patients
(00:48):
have a voice in the healthcaresystem.
Beyond her professionalachievements, kim finds joy in
reading, volunteering at herdaughter's schools and spending
time with her family.
Kim, thank you for being here,and your dedication to making a
positive impact is nothing shortof inspiring.
Speaker 2 (01:05):
Thank you so much.
I'm happy to be here today.
Speaker 1 (01:07):
It is such a joy to have you here and listeners.
We were just complaining aboutthe cold weather and I don't
envy you right now.
Speaker 2 (01:13):
No, it is a balmy three degrees here in Cincinnati
, and so we're just trying tostay warm.
Speaker 1 (01:19):
I think you need a heater next to you at all times,
maybe even a blanket.
I do.
I have a heated blanket onright now.
Let's dive in a little bit.
Kim, your story as both aprofessional advocate and a
parent is powerful.
Can you describe a little bitabout your personal experiences
raising children with uniqueneeds and how this led to this
path of advocacy?
Speaker 2 (01:40):
Sure, I've always been very interested in helping
children who have unique needs.
I originally majored in collegeand early childhood and early
childhood special education.
I was an interventionspecialist for a number of years
before landing at the ChildNeurology Foundation and in that
time my husband and I adoptedtwo little girls, and one of my
(02:01):
daughters actually was diagnosedat one with two rare brain
conditions schizencephaly andpolymicrogyria.
We just recently found out thatshe actually has an ultra,
ultra rare condition we foundout yesterday from whole genome
testing.
She is one of two identified tohave the condition that she has
.
It is called Linspad syndrome.
(02:23):
I'm probably going to be divinginto advocacy in that area soon,
but I really started early on,when my daughter was diagnosed
with her two-year brainconditions, by trying to find
interventions that would workfor her, that were going to be
impactful.
I researched, I talked to a tonof different families and then
got her involved in clinicaltrials.
(02:43):
Because the one thing that Irealized very early on is that
my insurance would only cover 20OT, 20 PT and 20 speech visits,
as if she had had an accident,and that's per year, and so you
know those visits would be gonein a heartbeat and I needed to
find a way that I could affordto give her intensive therapy
(03:03):
that was really going to movethe needle for her.
I found that in clinical trials.
So through my work by orthrough my participation in the
clinical trials, I then wasasked to serve as a co-chair on
a phase three clinical trialcalled I Acquire, out of Roanoke
, virginia Tech.
I met some wonderful people inthat advocacy space who also,
you know, have a heart forhelping children with rare
(03:24):
conditions, and some of thosepeople worked at the Child
Neurology Foundation, which ishow I came full circle and was
employed at the Child NeurologyFoundation.
We're myself, along with mycolleagues, actually get to help
others who have children withcomplex health care needs.
We also support clinicians aswell.
We have our hands full.
There's a lot of good workgoing on in the space and a lot
(03:45):
of connections that we make witha lot of our advocacy partners,
and we really kind of serve asthis hub connecting our entire
community together to supportfamilies and children with
complex health care needs.
Speaker 1 (03:55):
That's an incredible journey, but I have a feeling
it's extremely rewarding.
Speaker 2 (04:00):
It is very rewarding.
Yes, for sure.
I always say that my life is mywork and my work is my life,
because they're so intertwined.
If I am doing a wonderful jobat my job, then people like me
are going to thrive and peoplelike me and my family are going
to benefit.
It's personal for me.
It's personal and professional.
(04:21):
I think that's what gives methe drive to really do what.
Speaker 1 (04:24):
I do every day.
I think that's what makes itbetter.
It's better when you get it.
You understand these familiesso you can better support them.
Speaker 2 (04:31):
Yes, I mean there are so many challenges that our
community faces every day, someout of the blue, some that are
just consistent and dailychallenges that really can wear
on you.
And for me it's about buildingthat community for families so
that they're not feeling likethey're alone all the time.
A lot of people in ourcommunity it's really difficult
(04:53):
to go outside of the home withtheir children, especially if
they have some harmful anddisruptive behavior or if they
have seizures consistently thataren't controlled and it's scary
.
It's scary to go out into thecommunity.
So the more we can connectfamilies who are dealing with
these similar things, the betterour families do, the greater
their mental health is and themore connected they are to the
resources that they need in thecommunity.
Speaker 1 (05:14):
That's a really important point that you brought
up is connection is crucialbecause it's easy for these
families to find themselvesliving on an island.
Speaker 2 (05:25):
Because it's easy for these families to find
themselves living on an island?
Yes, for sure, and you thinkyou're the only one you know
when you're going through it.
You think you're the only onebecause you're dealing with the
same things over and over andover every day and maybe your
old friends don't get this newlife that you live.
But in all reality, yes, havinga rare condition, you know it's
rare sort of for your condition, but there are a lot of
(05:46):
families out there who havechildren with rare conditions.
It might not be identical toyours but they deal with a lot
of the same challenges andrewards that you deal with every
single day.
And so you know it's importantto have that community.
My daughter is enrolled in CPSoccer and it is just a lifeline
for us to be able to connectwith these other families.
(06:08):
And you know, when my daughterwas really, really struggling, I
knew that when we went to CPSoccer those moms there were
going to treat her like you knowthey were her own, and I got a
little bit of a break to justget to be with other moms and
connect.
And if she was throwing a fitor having a tantrum, one of the
other moms would help out.
You know it was nice becausethey got it, they understood it,
(06:29):
and a lot of times my daughterwould listen to them better than
she would listen to me.
Right, because that's how itworks with children.
Speaker 1 (06:35):
Most definitely and, like you said, it doesn't have
to be the exact same rarecondition, as long as you find
people that support you, listento you and get it Absolutely.
Speaker 2 (06:47):
Yeah, there's something to be said about that
and you know we have educationalcourses at the Child Neurology
Foundation and so I'll get onand I'll hear some of the
conversations that the familiesare having and you know it's
ironic the connections thatpeople can make and what they're
connected by as well.
So you know, you know seeingbirthdays or you know that kind
(07:10):
of a thing.
It's just, there's somethingabout it that really you can
tell fuels these families whenthey make these connections.
I think we all need a littlebit more fuel behind us to help
us get through the day, the week, the month, the year.
It's so important, so importantto connect.
I think sometimes we don't doit because it's one more thing
(07:31):
to do when in all reality, thatconnection is actually going to
help you be better at caring foryour child with complex
healthcare needs or your familymember that you're caring for.
So, so important to make thoseconnections and go through it
with someone instead of byyourself.
Speaker 1 (07:48):
Absolutely.
You also oversee an incrediblenetwork of over 80 advocacy
organizations.
What does collaboration looklike within this network and how
do these connections make adifference for?
Speaker 2 (08:00):
families.
Sure, now we actually have over90 since the last time.
We're growing astronomically,and we're growing because there
is value in what this networkdoes.
Our Neurology Social ServicesNetwork basically gathers
together the rare diseasecommunity and provides emotional
and social service support tofamilies.
We send out an annual needsassessment here at the Child
(08:22):
Neurology Foundation.
One of the things that we heardloud and clear a few years back
was that families are reallystruggling to get connected to
other families who are walking asimilar journey.
They're also really, reallystruggling to get connected to
social service support.
So they're strugglingfinancially because insurance is
getting more expensive, healthcare is getting more expensive.
(08:44):
Health care is getting moreexpensive.
The needs that they have forequipment and supplies go beyond
a typical child, and so theyneed that support.
They need respite care, theyneed sometimes food, housing,
employment.
We've met so many families whocan't, where one parent or the
other cannot hold a job becausethe school keeps calling and
(09:07):
saying the child is havingrecurring seizures and they
can't have them at schoolbecause it's not safe.
You know those things happenconsistently and so when you
have the loss of income, it isabsolutely impactful to a family
.
It can make it difficult to payyour mortgage or your rent.
(09:28):
We at the Child NeurologyFoundation have this network
where we can anyone who comes tous or any doctor who refers a
family to us.
They fill out a simpleassistance request form.
Then we get them connected tothe resources that they need.
We utilize that network ofadvocacy organizations.
We also have connections toover 25,000 different social
service organizations around theUnited States.
(09:49):
That network is reallyimportant.
We also work with our networkto collaborate on different
trainings.
We will help our network traintheir family support specialists
that work directly with theirfamilies in their community.
We also provide education forcaregivers for their mental
health so that they learnstrategies to survive, not just
thrive.
That's to thrive, not justsurvive.
(10:11):
The opposite there, that'sactually the name of our course
from surviving to thriving.
Because we want to support ourfamily's mental health, we want
to have them think about thesechallenges in a different way so
that they can be successfulwith you know, everything that
kind of gets thrown at themthroughout the year and
throughout, you know, day in andday out.
With our network we've alsocreated a ton of resources and a
(10:32):
ton of supports, like atransition of care toolkit.
So those families that aretransitioning from pediatric to
adult care.
We have resources for that.
We have seizure action plansthat will be helpful if your
school is, you know, reallystruggling to get on the same
page with.
How do we handle a child havinga seizure?
What are the proper steps thatwe should be taking?
(10:53):
I've actually used our childneurologist new visit toolkit
with a couple of differentneurology appointments that
we've had for my daughter, justto collect my thoughts
beforehand and make sure I haveall the information that I want
to communicate to theneurologist right there in front
of me, because we know when weget in these meetings they only
have a limited amount of timeand you're trying to give them
all the information that youhave about your child, and it's
overwhelming and it's hard,especially the older they get
(11:15):
and the more history they have.
Finally, we have a respite carenotebook as well, which, if you
can find respite care, if thatis available to you in your area
, it basically allows you to putall the information down about
your child so that your respitecare provider knows what to do.
What do they do if your childhas a seizure?
What are some calmingstrategies for your child?
(11:35):
You know anything andeverything you can think of that
would help make that caresuccessful for your family?
Speaker 1 (11:41):
What does it look like when a family receives this
diagnosis and they come to you?
Where do you go from there atthe beginning?
Speaker 2 (11:49):
Good question.
Some families reach out to usthrough our assistance request
form.
Some call.
Regardless of how they get intocontact with us, they can be
referred from their clinician.
We pick up the phone and wecall them and we say you know,
tell us your story.
You know, we want to hearwhat's going on.
Maybe they have very littleinformation.
If they have very littleinformation, it's our job to
give them education, to givethem all the information that
(12:11):
can be helpful to them, but,more importantly, to connect
with them because, again, it canfeel so lonely, especially
initially on this journey.
But there are lots of facebookgroups out there.
There are a lot of otherfamilies who are dealing with
these challenges, so we get themconnected.
We actually have a socialworker on staff.
She speaks English and Spanish,which is really helpful, so she
(12:31):
can kind of be thatintermediary between a family
and whatever resource it is thatthey need, so she can help find
those resources for families.
A lot of times families willcome to us and they'll say you
know, I'm just looking foranother family.
And then we get to hear theirstory and we realize, wow,
they're about to lose theirhouse, or they really need to
put food on the table, orthey're struggling to just get
(12:52):
school supplies for their childat the beginning of the school
year, whatever that may be.
We then say, hey, we can helpwith you know, we can help with
those extra things that youweren't initially probably
calling about, but we cansupport you if you want us to
help you.
That is wonderful.
We actually had a family whocalled us.
They were looking for care froma specialist for their child
and they had to fly, and it wasvery expensive and that can be a
(13:16):
huge barrier.
A lot of people in the raredisease community do not have a
doctor in their area thatspecializes in what they're
going through or what theirspecific condition is, and so
it's really important to getthem to the doctor that is
researching that condition, ifpossible, that has the clinical
trials that are happening withthat condition or just has the
(13:36):
most experience with that, hasseen a lot of other kiddos with
that condition, and so we haveseveral partners in our network
that can help fly families fromone area of the country to the
other we partner with, and thatis also, you know, free of cost
for the family.
There's also transportation giftcards for when they hit the
ground and they have to take anUber or something to get.
(13:58):
You know it's not just a flight, there's also an Uber to get to
the doctor's office and thenthere are inevitably other costs
that they have to stayovernight.
You know we partner with RonaldMcDonald Houses and other
organizations that can help withhousing and really make this
affordable for families to beable to get the best care that
they actually need.
You know we go above and beyond, we try to be supportive and we
(14:23):
try to listen as much as we canto what the family's going
through, because we trulybelieve that when we listen
we're going to hear the familyand be able to support them in
the ways that they need supportin.
Speaker 1 (14:38):
I think it's great that you mentioned all the
different moving parts A lot oftimes.
To those of us that don't havea rare kiddo, we don't realize
that.
Okay, we got you there on aflight, but what's next?
What do you need next?
What do you need to get there?
Because there are a lot ofmoving parts and there are those
things you are going to needonce you get to the location.
Absolutely.
Speaker 2 (14:58):
I mean just traveling , you know, if you have a
wheelchair or you know any sortof extra equipment, you have to
think about those things.
There are inevitably going tobe barriers, and so families do
have to really, really, reallyplan ahead.
I think the group that we haveamongst 90 advocacy
organizations all of theorganizations, are willing to
(15:20):
step up and help families getwhatever they need at that point
, and so there are lots ofdifferent options.
We even have for those familieswho don't have a diagnosis.
We have another organizationcalled the Undiagnosed Diseases
Network Foundation that can helpfamilies get to the bottom or
the root of the issue as closeas they can.
(15:41):
Anyways, sometimes you knowthere aren't reasons for things
or we can't get to the bottom ofit or it's too unknown right at
this point in time.
But genetic testing is evolvingand we're finding out more and
more and more every single day.
So we have partners as wellthat help with genetic testing
to try to find some of thoseanswers to our questions, and I
(16:02):
think sometimes those answersare comforting to families.
To know the why behind it mightnot change treatment, or it
very well may change treatmentfor your child.
Going forward, you might bemore aware that this condition
might be associated with a heartcondition or something else
down the road that we need to beproactive about, and so it's
really good to have as much ofthe picture as you can have for
(16:26):
a family, definitely.
Speaker 1 (16:28):
You also played a key role in establishing the parent
council for I Acquire clinicaltrial.
Why is it important to havefamily voices in clinical
research and what impact haveyou seen from this work?
Speaker 2 (16:42):
Yeah, great question.
I was actually approached to beon the council shortly after my
daughter completed one of thepredecessor trials to this one.
So I acquired clinical trials aphase three constraint-induced
movement therapy trial and it isone of the trials that, since
it is a phase three, my daughterparticipated in the predecessor
trials, baby Champs and Champsand so I was familiar with the
(17:05):
process.
I was also very involved in mydaughter's treatment and so they
said, hey, will you come on andbe the patient voice?
And from very, very early on Ilearned that this wasn't going
to be any old trial where thereis hierarchy between the
professionals.
On this trial we were equalpartners.
(17:26):
All of the parents on thecouncil were equal partners with
the researchers and with thetherapists, with everyone, and
they wanted us at the table inevery committee meeting and
whenever decisions were beingmade they wanted to hear our
opinion.
And that was so importantbecause there were key decisions
that were made because of ourinput, the very first being
(17:48):
actually within 24 hours ofmyself joining myself and
another person joining thecouncil.
We completely revamped thebrochure that was supposed to go
out to families, recruitingthem for the trial.
Initially, when it was sent tous.
It was full of so much languagethat I had a difficult time
understanding and I felt like Iwas pretty knowledgeable on the
(18:09):
subject to having had mydaughter in the predecessor
trials, and so I said it wouldbe really nice if we had some
pictures of kiddos in here, ifit was laid out in language that
families could understand.
They were super open, went homeand completely redid it and
they said this is wonderful.
Thank you so much.
From there it took off.
We've done the assessments, thesix month and 12 month
(18:31):
assessments for the child.
We have actually just concludedour fifth year and enrolled our
final patient.
Even through COVID we were ableto help with recruitment.
We hit our recruitment numbers,which is absolutely wonderful,
even through the challenges ofCOVID.
One of the things that werecommended to the researchers
right away was that we utilizesocial media to our benefit.
(18:55):
They were very worried aboutthat because social media
there's so much bias.
Typically people are tellingtheir experiences.
They're saying, yes, this isgreat or no, this isn't.
And what we found is, as acouncil, we had a response that
we could give to families whoare inquiring about the trial
that was not biased, that gavethem the information they needed
(19:17):
and got them in contact withthe people who could help give
them even more information aboutthe trial, so that allowed us
to actually eliminate some bias.
What we had seen in the trialsbefore that was people saying,
oh this is the best, we lovethis, and they would go on and
on and on and on and on for along time.
And we didn't have that withthis trial, which is amazing
(19:39):
because that does.
It limits the bias there, andwe were able to help researchers
in that way by utilizing socialmedia.
We created housing pamphlets forfamilies so they knew where to
stay, because there were 13different locations across the
United States and familiesneeded they were going to travel
.
Some families inevitably had totravel Where's the closest
Ronald McDonald house?
(19:59):
Are there Airbnbs that areaffordable?
What can we do to make thisexperience able to be had by as
many people as possible?
So you know, those are justsome of the ways you know we
really helped.
We actually just had apublication that was published
in the American Academy ofPediatrics journal, pediatrics,
on the entire process of theparent council and how it got
(20:20):
started.
What are some things that wouldchange if we were to go back
again?
And so you know we're reallyproud of the work that we've
done on the council and are nowlooking forward to working on
how the results are disseminated.
So we're really excited aboutthat and, you know, looking
forward to the next trial.
Speaker 1 (20:37):
This sounds like another incredible resource for
those that are in need of it tobe able to take that pamphlet,
dive in and tweak it how itneeds to be.
That's incredible.
Speaker 2 (20:46):
Yeah, and I always tell people, you know, clinical
trials are the mostunderutilized resource that we
have.
When insurance fails you, youhave this opportunity to go to a
clinical trial site.
And it's not just medicationtrials, right?
Yes, those are great as well,but there's also things for, you
(21:06):
know speech therapy, physicaltherapy, occupational therapy
all of these differentopportunities and a lot of times
it is things that researchersreally have a question about Is
this going to work for thispopulation of people?
And sometimes these are thetherapies that end up, you know,
making it out into thecommunity and really proving to
be successful and impactfultherapies for patients.
(21:30):
You know, I highly highlyrecommend checking out Clinical
Trials.
Clinicaltrialsgov is amazingand you can find so many
different resources all over thenation.
We've done several and we'veactually stayed at Ronna
McDonald Houses when we doclinical trials.
I think in my daughter'slifetime we spent well over six
(21:50):
months in a Ronna McDonald House.
You know, getting my childtherapy.
She had spinal surgery.
We stayed there.
Clinical trial work Likethere's just.
There's so much good that comesfrom staying at a Ronald
McDonald House.
And again, you get community,you get people who are
experiencing challenges and alsosuccesses and, you know,
(22:12):
getting over hurdles together,and that's important as well.
It's so valuable it's needed.
That's important as well.
It's so valuable it's needed.
It is, it is very needed.
It is absolutely needed.
I think connection and theright treatment options for
people and everyone's going tobe different, and so I think you
know it's your job as a familyto decide what is doable for
(22:32):
your family, what is going to bethe most impactful for your
family, and go from there.
I don't think you knoweverything is going to be
perfect for everyone, but it isworth, you know, looking for
things that could and that arenovel and you know could have
significant impact on the healthand well-being of your child
(22:52):
and your entire family.
Speaker 1 (22:54):
Yes, yes, you contributed to initiatives that
focus on improving health careaccessibility in rural areas.
What are some of the challengesthese families face being
further away and how are youworking to address them,
especially with well, reallyacross the board, I would say.
Speaker 2 (23:11):
For certain things like respite care, almost
anywhere you go, it's prettychallenging to find respite care
, but in rural areas there'seven more of a hurdle because
there often aren't doctors,hospitals, therapists close by,
(23:31):
and so a lot of people just gowithout.
Traveling is expensive, can bevery expensive.
That is hard.
One of the benefits to ourNeurology Social Services
Network and our Family SupportProgram is that it doesn't
matter where you live.
We can connect you to resources.
Anywhere in the nation.
(23:52):
We can get you financialassistance.
There's even telehealth therapyfor occupational therapy and
things along those lines now, sotelehealth is really
contributing to being able tomake some of these therapies
more accessible as well.
One of the things that wereally saw in rural communities
is that they want to, they haveto trust you, they want to know
(24:15):
that you are there to supportthem and they want to actually
know who you are.
Who is it that's providingthese services to our families?
One of the best things we didis go into the community.
Go into the community, have anevent for them, provide
education along the way, givesupport while you're there,
because when you develop thoserelationships with people who
(24:38):
can get them the things thatthey are in need of.
Relationships are incrediblyimportant and you know we have
to get back to you know meetingpeople where they're at, instead
of expecting people to goelsewhere for that care.
And we can do that, especiallyat the Trinerology Foundation.
Like I said, having our networkif you have a cell phone or a
(24:59):
phone attached to a wall, itdoesn't matter.
We can connect you with otherresources that are out there.
Now you can ship thingsanywhere.
You can provide financialassistance in a variety of
different ways.
We're able to get into thoseareas a little bit more and
connect those people to a largercommunity.
(25:20):
The other thing, as I said,about going into the community,
you're kind of pulling peopleout of their houses and meeting
other people in the communitythat have similar needs.
When you do that, you'recreating community within the
community.
That is important.
Making sure that kids withunique needs are included in
sports activities orrecreational activities, that
they're going to theseafter-school events, that
(25:43):
they're made accessible for allfamilies that's really, really
important.
I think going into thecommunities is number one.
I know that's hard for somepeople, but I think people want
to be around other peopleultimately, and they want to
feel connected to people.
I think it's kind of mostly inour nature to want to find other
people who are experiencingsimilar things.
(26:03):
If we can get into communitiesand show them that we understand
their challenges, we havesolutions for those challenges.
That's even better for them.
Speaker 1 (26:12):
Could you explain, because I'm sure there's
listeners out here that are notfamiliar with some of the terms
that I have discussed, likerespite care?
Would you mind talking aboutwhat these terms mean?
Yeah, sure.
Speaker 2 (26:24):
So respite care is essentially someone who comes
into your home, or there aresome organizations where you can
drop your child off for aperiod of time so that someone
else can care for your child andgive you a break.
Someone else can care for yourchild and give you a break.
We as human beings especiallyif we're dealing with trauma or
things that are reallychallenging, over and over and
over again, it starts to impactour mental health.
(26:45):
Sometimes, getting a couplehours of a break is super, super
beneficial and can reset you.
That's really the point ofrespite care.
My daughter has an amazingrespite care provider that comes
in and not only does she giveus a break, but she also teaches
my daughter different skills.
She'll bring her out into thecommunity.
(27:07):
My daughter is really fearfulof things that are high, like
buildings that have highceilings, so she'll take her to
those buildings and help hercope and work through some of
those things that she is fearfulof.
It can really help your familyholistically Help the child
learn new skills, but also helpyou get a breather.
Maybe you want to go getsomething done.
You want to go to the grocerystore by yourself?
(27:27):
You can do that when you have arespite care provider.
Let's see some of the otherterms.
I may have said CIMT, that'sconstraint induced movement
therapy.
That is when you actually castyour non-affected side to force
you to use your affected side.
That is a form of therapy thathas shown to kind of rewire the
(27:49):
brain and really get kids tostart utilizing their side that
is more difficult for them touse than the other.
That's common with hemiparesis,when one side of your body is
weaker than the other.
What other terms have I said?
I know we've talked a little bitabout clinical trials.
Just most of the time,participating in clinical trials
it's really where a researcherhas a hypothesis.
(28:11):
They want to test it, and seeis what I think.
I suspect this may happen, butI want to test it and I want to
see, and so you know, just foran example, in my daughter one
of my daughter's therapies theywere testing to see.
You know, if they casted onehand, what is the progress they
would make in the right hand.
One of the things they actuallyfound, though, is that it
(28:32):
actually improved the left handas well, the one that was casted
.
So the the non-affected side,and so mind-blowing Something
that came out of research thatthey never anticipated happening
.
They didn't predict that, butthey were really, really
surprised by those findings andit's encouraging and exciting to
(28:52):
let those things happen.
But you just never know withclinical trials, you don't know
what the outcome is going to be,and so it is a test.
It is simply a test.
A lot of these tests have goodthoughts behind them.
They're not just random.
They don't come out of nowhere.
A lot of times there arepredecessor trials that lead up
to that, up to that clinicaltrial, and so they want to try
and see the effectiveness oftheir hypothesis and whether you
(29:16):
know it is going to bebeneficial if they release that
treatment option to the entirecommunity.
So it's exciting to be a partof a clinical trial.
One of the things you do have tothink about is the cost
associated with it.
Even though they are free mostof the time, there are costs
associated as far as taking offtime from work or travel time.
Those kinds of things that youhave to think about, and these
(29:39):
are actually things thatresearchers are getting a lot
better about thinking about andare compensating families for
their time.
Many are, and so that's a goodsign because they value the time
of the patients.
That's important to note,because time is limited, it's
always hard to come by time.
It's nice when someone doesreimburse you for the time it
takes, but there can be benefits, obviously to the patient as
(30:00):
well, if the therapy iseffective or the treatment
option is effective.
Speaker 1 (30:04):
Exactly Some of the terms and some of the programs,
of course, we're not going to befamiliar with because, hello,
we didn't have a rare kiddo or arare condition.
Exactly In the work that you do, do you sit down with these
families and explain to themokay, this is what the illness
(30:25):
is.
We're going to learn more andthese are what your options are
within the programs.
Speaker 2 (30:30):
We do Absolutely.
One of the other things that wehave created and we're actually
updating and adding a lot moreconditions is our disorder
directory.
It has a ton of differentdisorders in there and it has
signs, symptoms, therapy thatmay be recommended.
It has advocacy organizationsthat you can get connected with
(30:52):
as well, so it is one of thefirst things that comes up when
you Google a condition.
It'll have our disorderdirectory on there.
We take a lot of pride in that,because we actually saw someone
who posted on social media aprintout of our disorder
directory on there.
We take a lot of pride in thatbecause we actually saw someone
who posted on social media aprintout of our disorder
directory page and said this iswhere I learned about my child's
condition, and we were like yes, thank you, like we're so happy
(31:14):
that you utilized that resourcefor your child and we hope that
that's the beginning for you,right?
There's even more informationout there, and the thing about
rare conditions is that they'reever-changing, they're evolving,
we're finding out more and moreinformation, we're getting more
treatment options, and so it'sreally important to be connected
to these advocacy organizationsbecause oftentimes they're
(31:35):
working directly with theresearchers and they know the
best treatments.
So, even if you just get ontheir newsletter, you'll be up
to date on some of the thingsthat are happening in your space
and be able to take advantageof some of the new therapies and
treatments that are availablefor your family and, if nothing
else, you're also able to findsupport groups and you're able
to find other people who you canconnect with as well.
(31:58):
So it's really important, Ithink, to get as much
information, to fill yourselfwith as much knowledge about the
condition and also do what youcan do.
I think it's unfair to saybecause it says here that I can
do this therapy and that therapyand that therapy that you have
to do it all.
It can be overwhelming andthat's not good for anyone,
(32:19):
right?
So there are times when we haveto step back and go what can I
do?
Right now?
Speaker 1 (32:26):
I'm going to do the thing that I can do right now,
and later I'll do somethingmaybe different, but that's okay
, there's services within theorganization that support the
families, but then you also areaware of these other
organizations that they can getinvolved with that probably
offer family services.
Now you're looking at all theseoptions of support and support
(32:47):
groups, like you said.
Speaker 2 (32:48):
Yeah, absolutely.
We have a partner calledCourageous Parents Network and
they have a wonderful resourcecalled Neurojourney.
That's another resource that wereally guide people to, because
it is an extensive look atdifferent conditions from a lot
of different perspectives.
So a gastro perspective, sodiet, how do things move through
(33:09):
your body?
It can be from just like aschooling perspective too right,
does it impact your eyes?
Does it impact your learningCognition, what is it that it
impacts?
And Neurojourney does a greatjob of breaking down different
conditions so that it'sunderstandable to the average
person in multiple languages,which is fantastic as well.
(33:32):
We have the Pediatric EpilepsySurgery Alliance as a partner
and they have and I'm sayingthis as a former intervention
specialist or special educationteacher they have one of the
most incredible school resourcesI have ever seen.
If you are going through theIEP process, if your child is on
an IEP or gets additionalinstruction from a speech
(33:54):
pathologist or an occupationaltherapist or a physical
therapist at school or needsacademic testing, whatever that
may be they have you set withtheir resource.
I mean, they literally willtell you what goals that could
potentially help your child.
They really help you understandthe process and that's
wonderful.
Your child doesn't have to haveepilepsy surgery to benefit
(34:16):
from their school resource, so Ihighly recommend going to them
for anything educational.
They have a wonderful wealth ofresources on their website.
Speaker 1 (34:26):
Thank you for sharing about that.
We're going to talk aboutpatient engagement Now.
You serve on the FDA's PatientEngagement Collaborative and
Advisory Committee positionsthat play such a critical role
in bridging the gap betweenfamilies and healthcare systems.
What insights have you broughtto these platforms and how do
they influence change?
Speaker 2 (34:45):
Great question.
So whenever you have somethinglike a patient engagement
collaborative or an advisorycouncil, you're really looking
for the insights from patients,their challenges, their
struggles, things that theyreally want to make.
They want someone to help themmake improvements in certain
areas, and so I think what theFDA has done with some of these
(35:05):
collaboratives is they haveallowed patients to have a seat
at the table to voice theirconcerns, to say, hey, we really
would like to see this happenor hey, we can work together in
these ways.
One of the things that Ipresented on through the Patient
Engagement Collaborative isdecentralized clinical trials.
That is a lot.
(35:25):
It basically just means aclinical trial that is not
housed in a traditional locationlike a hospital.
So, for instance, maybe thetherapist comes to your house
and the therapy is virtual andit's not in that hospital
setting.
So that's decentralized.
It's not always going to occurin the same location.
So that's one of the things.
The other thing that is reallyneat about these collaboratives
(35:47):
is that different professionalsfrom different areas join
together and share theirexperiences and find ways that
they can collaborate together tomove the needle forward.
I think whenever we're workingtogether we get further.
When we are just kind of siloedinto our own individual disease
states.
We move a lot slower, we don'tgo as fast.
(36:08):
So the more commonalities wecan find amongst each other, the
more we're going to be able tomake progress, to make change
that's impactful for patients.
So, you know, I think it'sreally important what the FDA
has done in creating thesecouncils and PCORI.
They do a lot as wellpatient-centered, a lot of
(36:28):
patient-centered clinical trialwork to really move the needle
forward and have patients withlived experience, people with
lived experience engaged in, youknow, clinical trials and in,
you know, making treatments andtherapies that patients want and
that patients need, instead ofjust looking at it from a
research side and saying, whatdo the researchers want to work
(36:50):
on today?
Right, it's really involvingthe people that are going to be
impacted by it, because if thosepeople don't care about that
therapy that you're researching,it's not going to be utilized.
It's not going to be utilized,it's not going to be beneficial.
So we've got to put things outthere that make a difference for
patients.
I think you know it's reallyimportant.
It was really important for meto also hear from the FDA how
(37:12):
their system works, because it'shard to understand sometimes,
being a patient that there arelimitations amongst you know
some of these organizations andthere are ways that we can work
together to move past some ofthese limitations, or ways that
we can be creative together toget around some of these
limitations.
Right, but whenever we have thesystems and the people working
(37:34):
together, that's when the realchange happens.
It can't happen separately.
It has to happen together inorder to make a big impact for
the community.
Speaker 1 (37:43):
Yes, absolutely, I could not have said it any
better Edited parenting andbalance With all of your
advocacy, work and professionalcommitments.
How do you balance this withbeing present for your family,
especially your daughters?
Speaker 2 (37:58):
Yes, this is difficult, very, very difficult,
especially because, as I saidearlier, my life and my work are
kind of intertwined and somepeople say that's not healthy.
It is healthy for me because Ifeel like I'm doing something to
help my family and familieslike mine.
So for me it fuels me.
It really does.
It makes me work really hardwhen I'm at work.
(38:19):
But I have had to get a lot ofcoaching from my bosses about
stepping away.
I am so fortunate to work at anorganization that talks the
talk and walks the walk as faras taking care of yourself.
If my daughter's in thehospital or there's something
going on that's big or impactful, they literally say step away,
(38:43):
step away, take care of yourself.
They mean it, they live by thatand follow that, so they model
that as well.
I've now worked at a foundationfor three years and I for the
first time checked out duringour two-week shutdown at the end
of the year.
It took me that long to learnto just check out for a period
(39:03):
of time and I spent more timeplaying games with my children
and puzzles.
We love to do puzzles anddifferent things, making
memories, and so I had to learnto compartmentalize a little bit
better rather than it allweaving in and out together At
our work.
We have time to volunteer.
If I need to volunteer at mydaughter's school for a party or
(39:24):
something I can do that, I canstep away.
I'm supported to do thosethings.
I think employers need to knowtheir employees need to know
what they have going on and theyneed to provide opportunities
for people to take care ofthemselves.
If you're an adult, I think youcan manage that right.
You can decide for yourselfwhen you need to walk away and
(39:45):
when you're just giving your alland you are good to go right.
But sometimes getting that restand that rejuvenation is gonna
make you do better work.
That's really, really importantand our leaders truly do
believe that at our organization.
That really helps.
With my personal life and takingcare of my daughters.
There are times where I've hadto work a little bit.
Later at night, when we haveeducational courses, my
(40:08):
daughters will sometimes come inand sit and listen.
I think it has opened theireyes even more so that there are
people like them out there inthis world, that not everyone
has a perfect life and that weall have challenges.
We all have struggles and wecan do something about it too.
There are resources, there arepeople to connect with that can
(40:30):
help us live a fuller life andreally be the best people that
we can be.
I do.
I talk about my work with them.
I invite them in to listen tothe things that I do, because I
think I want them to dosomething that is going to
benefit the world.
I want them to help people whoare like them and different from
them.
I think the best way to do thatis to model it for them.
(40:52):
And what does that mean andwhat does that look like for
people?
If I can model it, maybe theywill follow in my footsteps a
little bit and help people, andmaybe they'll go a different
path, and that's fine too.
I just want them to be kindpeople that are caring about all
kinds of people.
Speaker 1 (41:08):
It sounds like an incredible place to work.
You get to help people, you getto help your daughters and you
get to show them what it's liketo be an amazing support system
to others.
Speaker 2 (41:18):
Yes, there's beauty in that there is, and I think
everyone needs someone that theycan lean on.
I want them to realize it'sokay to lean on other people,
because we can't do everythingalone.
I don't want them to beisolated.
I want them to make connectionsand I want them to find support
that they need when they needit.
So I try to model that for them.
I try to live that for them,hopefully it works.
Speaker 1 (41:39):
Catch up with me in 10 years.
It's so true.
I think that most parents feelthat way, don't we?
Speaker 2 (41:44):
Yes, for sure.
Speaker 1 (41:48):
For families who might be listening today.
What advice, what encouragementwould you offer as they
navigate their own healthcarejourneys and advocacy paths,
whether it be for themselves orfor their children?
Speaker 2 (41:59):
I think one of the things that I have learned along
the way is to just take onestep at a time.
So a lot of times it's easy tolook at the big picture and get
really overwhelmed and thinkwhat's going to happen.
You know, 20 years from nowwith my child, and I think we
have to stay in the here and now.
(42:21):
We have to make sure that whatwe're doing now will support
them moving forward.
But we can't get overwhelmed bythis is coming up and this
milestone and they're not goingto meet this or that.
Love them in the moment.
Love them for who they are nowand find the positive in who
they are right now.
And also give yourself grace,because you're not going to do
(42:43):
everything perfectly at everystep of the way and you
shouldn't second guess yourself.
Just keep moving one stepforward.
Do the next right thing thatyou need to do in the moment and
give yourself grace along theway.
You're doing the best that youcan and your child is going to
be okay.
Your child is going to be allright.
(43:03):
We can't fret about you knowwhat 20 years brings.
Speaker 1 (43:07):
You believe in making every moment count and leaving
a positive impact that shows,through everything that you say,
what continues to fuel yourpassion and drive for this work.
Speaker 2 (43:17):
Without a doubt it's my children.
I think you know I've alwayshad that passion.
Obviously I went into specialeducation initially, but helping
other people so that they don'texperience the same challenges
that we've experienced.
If I can make it better for thenext person, then whatever
challenge I went through wasworth it because someone else
(43:38):
can benefit from it.
So for me it is making thingsbetter for those around me.
If I can teach someonesomething that I've learned
along the way, why not?
I want someone else to havethat same information that I had
and use it to work for theirfamily if it helps along the way
.
Speaker 1 (43:55):
This is the fun and the personal.
On a lighter note, I know youlove reading.
Do you have a favorite bookrecommendation, either for
learning or just purely forpleasure?
Speaker 2 (44:05):
I have one that I just read that was so
fascinating to me.
It is actually called Brain onFire.
It is about this reporter forthe Post who had a rare
condition that I don't want togive away too much, but the
(44:26):
condition impacted her andcompletely changed who she was,
and it took doctors quite sometime to figure it out to the
point she almost died but didn't, and she lived to tell about it
and they were able to gettreatment for her.
But that book is wonderful.
And then just another onethat's not in the neurology
space that I have loved isactually a series.
(44:46):
Are the Hunger Games?
Totally off, but I just thinkthat is a fascinating concept
and just kept me on my toes atall times.
So I love to read.
So I have lots of books thatare, you know, are good ones
that I've read in the past, butthose are the ones that kind of
are on top of my mind right now.
Speaker 1 (45:06):
Those are some good ones.
I love to read too.
I think I love all kinds ofbooks.
You're going to find me readingeverything from a adventure to
romance to something moreserious.
I actually just looked up Brainon Fire because I felt it
sounded familiar, and it does,because it's actually a movie
too yes, yes, I have not seenthe movie yet, so I'm really
(45:29):
excited about that, but it's.
Speaker 2 (45:31):
I'm really really excited to watch the movie.
I hope the movie is really,really good.
I have a love-hate relationshipwith watching movies after
you've read the book, or viceversa, I don't know.
I always end up, I think,liking the books more.
Speaker 1 (45:47):
We tend to want to kind of pick apart the movie
afterwards and be like, okay,you forgot this, this and this,
this was important.
Why did you destroy thisAbsolutely?
Speaker 2 (45:59):
Yes, absolutely Good recommendations recommendations,
I think.
Speaker 1 (46:03):
For anyone that's listening to this, I'm going to
give you a little snippet.
Here's the summary.
It says a rare autoimmunedisorder popularized by the
autobiography movie brain onfire is triggered by an attack
on the mda receptors.
The disease occurs whenantibodies attack mda receptors
in the brain, leading to memoryloss, intellectual challenges or
(46:25):
changes, seizures and evendeath.
Speaker 2 (46:28):
Yes, it's wild.
She was completely typical andthen transformed into a
completely different personbefore she had treatment.
So it is absolutelyunbelievable.
It just goes to show how trulyremarkable the body is and also
how cool our healthcareprofessionals are for being able
to figure out something so rarein a timely way, you know, in a
(46:51):
timely manner.
So she got the help that sheneeded quickly and that's what's
important she lived to tell thestory.
Speaker 1 (47:00):
The story is mind boggling, yes it is Absolutely.
Speaker 2 (47:03):
You will hear some wild things that she did during
that time where she doesn'tremember an entire month of her
life and tore her family apart.
So you can really relate to asa caregiver, because watching
your child go through somethingso horrific and at some points
not having medical professionalsbelieve you is really
(47:24):
challenging.
It can be devastating.
It goes through all of that andit's fascinating.
Great book.
Highly recommend it and I'mgoing to watch the movies.
Make sure you let me know whatyou think, okay, I will.
Speaker 1 (47:35):
Well, kim, it's been an honor to have you here and to
share all of your expertise,along with some of your personal
journey.
I feel like we barely dippedour toes into the waters and I'm
sure we're going to have tohave you back to discuss more.
What I want to leave listenerswith is don't be afraid to reach
out.
Don't be afraid to reach outand ask some questions and just
(47:58):
say I'm drowning right now and Ineed some help.
I know that Kim would be happyto talk with you and help you.
Speaker 2 (48:03):
Absolutely yeah.
Reach out anytime.
You can email us at programs atchildneurologyfoundationorg.
I check that every single day,so feel free to reach out there.
You can also go to our websiteand fill out an assistance
request form.
If you need support or help,we're happy to help you.
That's what we do, that's whatfuels us, so give us fuel.
Speaker 1 (48:27):
Yes, now remember, listeners, that your story
matters, your voice matters andtogether we are stronger.
Until next time, don't forgetyour spoon.
Welcome back to my Spoonie Sisters.
Today I am thrilled tointroduce our incredible guest.
This is Kim, seasoned advocatewith over 18 years of experience
supporting children withspecial healthcare needs and
their families as a dedicatedmom raising children with unique
needs herself.
Kim's personal journey fuelsher deep passion and commitment
(00:25):
to this work.
In her current role at theChild Neurology Foundation, kim
oversees a network of over 80advocacy organizations, bringing
social and emotional support tofamilies.
She's also been instrumental inclinical trial advocacy and
patient engagement,collaborating with researchers,
clinicians and even the FDA toensure families and patients
(00:48):
have a voice in the healthcaresystem.
Beyond her professionalachievements, kim finds joy in
reading, volunteering at herdaughter's schools and spending
time with her family.
Kim, thank you for being here,and your dedication to making a
positive impact is nothing shortof inspiring.
Speaker 2 (01:05):
Thank you so much.
I'm happy to be here today.
Speaker 1 (01:07):
It is such a joy to have you here and listeners.
We were just complaining aboutthe cold weather and I don't
envy you right now.
Speaker 2 (01:13):
No, it is a balmy three degrees here in Cincinnati
, and so we're just trying tostay warm.
Speaker 1 (01:19):
I think you need a heater next to you at all times,
maybe even a blanket.
I do.
I have a heated blanket onright now.
Let's dive in a little bit.
Kim, your story as both aprofessional advocate and a
parent is powerful.
Can you describe a little bitabout your personal experiences
raising children with uniqueneeds and how this led to this
path of advocacy?
Speaker 2 (01:40):
Sure, I've always been very interested in helping
children who have unique needs.
I originally majored in collegeand early childhood and early
childhood special education.
I was an interventionspecialist for a number of years
before landing at the ChildNeurology Foundation and in that
time my husband and I adoptedtwo little girls, and one of my
(02:01):
daughters actually was diagnosedat one with two rare brain
conditions schizencephaly andpolymicrogyria.
We just recently found out thatshe actually has an ultra,
ultra rare condition we foundout yesterday from whole genome
testing.
She is one of two identified tohave the condition that she has
.
It is called Linspad syndrome.
(02:23):
I'm probably going to be divinginto advocacy in that area soon,
but I really started early on,when my daughter was diagnosed
with her two-year brainconditions, by trying to find
interventions that would workfor her, that were going to be
impactful.
I researched, I talked to a tonof different families and then
got her involved in clinicaltrials.
(02:43):
Because the one thing that Irealized very early on is that
my insurance would only cover 20OT, 20 PT and 20 speech visits,
as if she had had an accident,and that's per year, and so you
know those visits would be gonein a heartbeat and I needed to
find a way that I could affordto give her intensive therapy
(03:03):
that was really going to movethe needle for her.
I found that in clinical trials.
So through my work by orthrough my participation in the
clinical trials, I then wasasked to serve as a co-chair on
a phase three clinical trialcalled I Acquire, out of Roanoke
, virginia Tech.
I met some wonderful people inthat advocacy space who also,
you know, have a heart forhelping children with rare
(03:24):
conditions, and some of thosepeople worked at the Child
Neurology Foundation, which ishow I came full circle and was
employed at the Child NeurologyFoundation.
We're myself, along with mycolleagues, actually get to help
others who have children withcomplex health care needs.
We also support clinicians aswell.
We have our hands full.
There's a lot of good workgoing on in the space and a lot
(03:45):
of connections that we make witha lot of our advocacy partners,
and we really kind of serve asthis hub connecting our entire
community together to supportfamilies and children with
complex health care needs.
Speaker 1 (03:55):
That's an incredible journey, but I have a feeling
it's extremely rewarding.
Speaker 2 (04:00):
It is very rewarding.
Yes, for sure.
I always say that my life is mywork and my work is my life,
because they're so intertwined.
If I am doing a wonderful jobat my job, then people like me
are going to thrive and peoplelike me and my family are going
to benefit.
It's personal for me.
It's personal and professional.
(04:21):
I think that's what gives methe drive to really do what.
Speaker 1 (04:24):
I do every day.
I think that's what makes itbetter.
It's better when you get it.
You understand these familiesso you can better support them.
Speaker 2 (04:31):
Yes, I mean there are so many challenges that our
community faces every day, someout of the blue, some that are
just consistent and dailychallenges that really can wear
on you.
And for me it's about buildingthat community for families so
that they're not feeling likethey're alone all the time.
A lot of people in ourcommunity it's really difficult
(04:53):
to go outside of the home withtheir children, especially if
they have some harmful anddisruptive behavior or if they
have seizures consistently thataren't controlled and it's scary
.
It's scary to go out into thecommunity.
So the more we can connectfamilies who are dealing with
these similar things, the betterour families do, the greater
their mental health is and themore connected they are to the
resources that they need in thecommunity.
Speaker 1 (05:14):
That's a really important point that you brought
up is connection is crucialbecause it's easy for these
families to find themselvesliving on an island.
Speaker 2 (05:25):
Because it's easy for these families to find
themselves living on an island?
Yes, for sure, and you thinkyou're the only one you know
when you're going through it.
You think you're the only onebecause you're dealing with the
same things over and over andover every day and maybe your
old friends don't get this newlife that you live.
But in all reality, yes, havinga rare condition, you know it's
rare sort of for your condition, but there are a lot of
(05:46):
families out there who havechildren with rare conditions.
It might not be identical toyours but they deal with a lot
of the same challenges andrewards that you deal with every
single day.
And so you know it's importantto have that community.
My daughter is enrolled in CPSoccer and it is just a lifeline
for us to be able to connectwith these other families.
(06:08):
And you know, when my daughterwas really, really struggling, I
knew that when we went to CPSoccer those moms there were
going to treat her like you knowthey were her own, and I got a
little bit of a break to justget to be with other moms and
connect.
And if she was throwing a fitor having a tantrum, one of the
other moms would help out.
You know it was nice becausethey got it, they understood it,
(06:29):
and a lot of times my daughterwould listen to them better than
she would listen to me.
Right, because that's how itworks with children.
Speaker 1 (06:35):
Most definitely and, like you said, it doesn't have
to be the exact same rarecondition, as long as you find
people that support you, listento you and get it Absolutely.
Speaker 2 (06:47):
Yeah, there's something to be said about that
and you know we have educationalcourses at the Child Neurology
Foundation and so I'll get onand I'll hear some of the
conversations that the familiesare having and you know it's
ironic the connections thatpeople can make and what they're
connected by as well.
So you know, you know seeingbirthdays or you know that kind
(07:10):
of a thing.
It's just, there's somethingabout it that really you can
tell fuels these families whenthey make these connections.
I think we all need a littlebit more fuel behind us to help
us get through the day, the week, the month, the year.
It's so important, so importantto connect.
I think sometimes we don't doit because it's one more thing
(07:31):
to do when in all reality, thatconnection is actually going to
help you be better at caring foryour child with complex
healthcare needs or your familymember that you're caring for.
So, so important to make thoseconnections and go through it
with someone instead of byyourself.
Speaker 1 (07:48):
Absolutely.
You also oversee an incrediblenetwork of over 80 advocacy
organizations.
What does collaboration looklike within this network and how
do these connections make adifference for?
Speaker 2 (08:00):
families.
Sure, now we actually have over90 since the last time.
We're growing astronomically,and we're growing because there
is value in what this networkdoes.
Our Neurology Social ServicesNetwork basically gathers
together the rare diseasecommunity and provides emotional
and social service support tofamilies.
We send out an annual needsassessment here at the Child
(08:22):
Neurology Foundation.
One of the things that we heardloud and clear a few years back
was that families are reallystruggling to get connected to
other families who are walking asimilar journey.
They're also really, reallystruggling to get connected to
social service support.
So they're strugglingfinancially because insurance is
getting more expensive, healthcare is getting more expensive.
(08:44):
Health care is getting moreexpensive.
The needs that they have forequipment and supplies go beyond
a typical child, and so theyneed that support.
They need respite care, theyneed sometimes food, housing,
employment.
We've met so many families whocan't, where one parent or the
other cannot hold a job becausethe school keeps calling and
(09:07):
saying the child is havingrecurring seizures and they
can't have them at schoolbecause it's not safe.
You know those things happenconsistently and so when you
have the loss of income, it isabsolutely impactful to a family
.
It can make it difficult to payyour mortgage or your rent.
(09:28):
We at the Child NeurologyFoundation have this network
where we can anyone who comes tous or any doctor who refers a
family to us.
They fill out a simpleassistance request form.
Then we get them connected tothe resources that they need.
We utilize that network ofadvocacy organizations.
We also have connections toover 25,000 different social
service organizations around theUnited States.
(09:49):
That network is reallyimportant.
We also work with our networkto collaborate on different
trainings.
We will help our network traintheir family support specialists
that work directly with theirfamilies in their community.
We also provide education forcaregivers for their mental
health so that they learnstrategies to survive, not just
thrive.
That's to thrive, not justsurvive.
(10:11):
The opposite there, that'sactually the name of our course
from surviving to thriving.
Because we want to support ourfamily's mental health, we want
to have them think about thesechallenges in a different way so
that they can be successfulwith you know, everything that
kind of gets thrown at themthroughout the year and
throughout, you know, day in andday out.
With our network we've alsocreated a ton of resources and a
(10:32):
ton of supports, like atransition of care toolkit.
So those families that aretransitioning from pediatric to
adult care.
We have resources for that.
We have seizure action plansthat will be helpful if your
school is, you know, reallystruggling to get on the same
page with.
How do we handle a child havinga seizure?
What are the proper steps thatwe should be taking?
(10:53):
I've actually used our childneurologist new visit toolkit
with a couple of differentneurology appointments that
we've had for my daughter, justto collect my thoughts
beforehand and make sure I haveall the information that I want
to communicate to theneurologist right there in front
of me, because we know when weget in these meetings they only
have a limited amount of timeand you're trying to give them
all the information that youhave about your child, and it's
overwhelming and it's hard,especially the older they get
(11:15):
and the more history they have.
Finally, we have a respite carenotebook as well, which, if you
can find respite care, if thatis available to you in your area
, it basically allows you to putall the information down about
your child so that your respitecare provider knows what to do.
What do they do if your childhas a seizure?
What are some calmingstrategies for your child?
(11:35):
You know anything andeverything you can think of that
would help make that caresuccessful for your family?
Speaker 1 (11:41):
What does it look like when a family receives this
diagnosis and they come to you?
Where do you go from there atthe beginning?
Speaker 2 (11:49):
Good question.
Some families reach out to usthrough our assistance request
form.
Some call.
Regardless of how they get intocontact with us, they can be
referred from their clinician.
We pick up the phone and wecall them and we say you know,
tell us your story.
You know, we want to hearwhat's going on.
Maybe they have very littleinformation.
If they have very littleinformation, it's our job to
give them education, to givethem all the information that
(12:11):
can be helpful to them, but,more importantly, to connect
with them because, again, it canfeel so lonely, especially
initially on this journey.
But there are lots of facebookgroups out there.
There are a lot of otherfamilies who are dealing with
these challenges, so we get themconnected.
We actually have a socialworker on staff.
She speaks English and Spanish,which is really helpful, so she
(12:31):
can kind of be thatintermediary between a family
and whatever resource it is thatthey need, so she can help find
those resources for families.
A lot of times families willcome to us and they'll say you
know, I'm just looking foranother family.
And then we get to hear theirstory and we realize, wow,
they're about to lose theirhouse, or they really need to
put food on the table, orthey're struggling to just get
(12:52):
school supplies for their childat the beginning of the school
year, whatever that may be.
We then say, hey, we can helpwith you know, we can help with
those extra things that youweren't initially probably
calling about, but we cansupport you if you want us to
help you.
That is wonderful.
We actually had a family whocalled us.
They were looking for care froma specialist for their child
and they had to fly, and it wasvery expensive and that can be a
(13:16):
huge barrier.
A lot of people in the raredisease community do not have a
doctor in their area thatspecializes in what they're
going through or what theirspecific condition is, and so
it's really important to getthem to the doctor that is
researching that condition, ifpossible, that has the clinical
trials that are happening withthat condition or just has the
(13:36):
most experience with that, hasseen a lot of other kiddos with
that condition, and so we haveseveral partners in our network
that can help fly families fromone area of the country to the
other we partner with, and thatis also, you know, free of cost
for the family.
There's also transportation giftcards for when they hit the
ground and they have to take anUber or something to get.
(13:58):
You know it's not just a flight, there's also an Uber to get to
the doctor's office and thenthere are inevitably other costs
that they have to stayovernight.
You know we partner with RonaldMcDonald Houses and other
organizations that can help withhousing and really make this
affordable for families to beable to get the best care that
they actually need.
You know we go above and beyond, we try to be supportive and we
(14:23):
try to listen as much as we canto what the family's going
through, because we trulybelieve that when we listen
we're going to hear the familyand be able to support them in
the ways that they need supportin.
Speaker 1 (14:38):
I think it's great that you mentioned all the
different moving parts A lot oftimes.
To those of us that don't havea rare kiddo, we don't realize
that.
Okay, we got you there on aflight, but what's next?
What do you need next?
What do you need to get there?
Because there are a lot ofmoving parts and there are those
things you are going to needonce you get to the location.
Absolutely.
Speaker 2 (14:58):
I mean just traveling , you know, if you have a
wheelchair or you know any sortof extra equipment, you have to
think about those things.
There are inevitably going tobe barriers, and so families do
have to really, really, reallyplan ahead.
I think the group that we haveamongst 90 advocacy
organizations all of theorganizations, are willing to
(15:20):
step up and help families getwhatever they need at that point
, and so there are lots ofdifferent options.
We even have for those familieswho don't have a diagnosis.
We have another organizationcalled the Undiagnosed Diseases
Network Foundation that can helpfamilies get to the bottom or
the root of the issue as closeas they can.
(15:41):
Anyways, sometimes you knowthere aren't reasons for things
or we can't get to the bottom ofit or it's too unknown right at
this point in time.
But genetic testing is evolvingand we're finding out more and
more and more every single day.
So we have partners as wellthat help with genetic testing
to try to find some of thoseanswers to our questions, and I
(16:02):
think sometimes those answersare comforting to families.
To know the why behind it mightnot change treatment, or it
very well may change treatmentfor your child.
Going forward, you might bemore aware that this condition
might be associated with a heartcondition or something else
down the road that we need to beproactive about, and so it's
really good to have as much ofthe picture as you can have for
(16:26):
a family, definitely.
Speaker 1 (16:28):
You also played a key role in establishing the parent
council for I Acquire clinicaltrial.
Why is it important to havefamily voices in clinical
research and what impact haveyou seen from this work?
Speaker 2 (16:42):
Yeah, great question.
I was actually approached to beon the council shortly after my
daughter completed one of thepredecessor trials to this one.
So I acquired clinical trials aphase three constraint-induced
movement therapy trial and it isone of the trials that, since
it is a phase three, my daughterparticipated in the predecessor
trials, baby Champs and Champsand so I was familiar with the
(17:05):
process.
I was also very involved in mydaughter's treatment and so they
said, hey, will you come on andbe the patient voice?
And from very, very early on Ilearned that this wasn't going
to be any old trial where thereis hierarchy between the
professionals.
On this trial we were equalpartners.
(17:26):
All of the parents on thecouncil were equal partners with
the researchers and with thetherapists, with everyone, and
they wanted us at the table inevery committee meeting and
whenever decisions were beingmade they wanted to hear our
opinion.
And that was so importantbecause there were key decisions
that were made because of ourinput, the very first being
(17:48):
actually within 24 hours ofmyself joining myself and
another person joining thecouncil.
We completely revamped thebrochure that was supposed to go
out to families, recruitingthem for the trial.
Initially, when it was sent tous.
It was full of so much languagethat I had a difficult time
understanding and I felt like Iwas pretty knowledgeable on the
(18:09):
subject to having had mydaughter in the predecessor
trials, and so I said it wouldbe really nice if we had some
pictures of kiddos in here, ifit was laid out in language that
families could understand.
They were super open, went homeand completely redid it and
they said this is wonderful.
Thank you so much.
From there it took off.
We've done the assessments, thesix month and 12 month
(18:31):
assessments for the child.
We have actually just concludedour fifth year and enrolled our
final patient.
Even through COVID we were ableto help with recruitment.
We hit our recruitment numbers,which is absolutely wonderful,
even through the challenges ofCOVID.
One of the things that werecommended to the researchers
right away was that we utilizesocial media to our benefit.
(18:55):
They were very worried aboutthat because social media
there's so much bias.
Typically people are tellingtheir experiences.
They're saying, yes, this isgreat or no, this isn't.
And what we found is, as acouncil, we had a response that
we could give to families whoare inquiring about the trial
that was not biased, that gavethem the information they needed
(19:17):
and got them in contact withthe people who could help give
them even more information aboutthe trial, so that allowed us
to actually eliminate some bias.
What we had seen in the trialsbefore that was people saying,
oh this is the best, we lovethis, and they would go on and
on and on and on and on for along time.
And we didn't have that withthis trial, which is amazing
(19:39):
because that does.
It limits the bias there, andwe were able to help researchers
in that way by utilizing socialmedia.
We created housing pamphlets forfamilies so they knew where to
stay, because there were 13different locations across the
United States and familiesneeded they were going to travel
.
Some families inevitably had totravel Where's the closest
Ronald McDonald house?
(19:59):
Are there Airbnbs that areaffordable?
What can we do to make thisexperience able to be had by as
many people as possible?
So you know, those are justsome of the ways you know we
really helped.
We actually just had apublication that was published
in the American Academy ofPediatrics journal, pediatrics,
on the entire process of theparent council and how it got
(20:20):
started.
What are some things that wouldchange if we were to go back
again?
And so you know we're reallyproud of the work that we've
done on the council and are nowlooking forward to working on
how the results are disseminated.
So we're really excited aboutthat and, you know, looking
forward to the next trial.
Speaker 1 (20:37):
This sounds like another incredible resource for
those that are in need of it tobe able to take that pamphlet,
dive in and tweak it how itneeds to be.
That's incredible.
Speaker 2 (20:46):
Yeah, and I always tell people, you know, clinical
trials are the mostunderutilized resource that we
have.
When insurance fails you, youhave this opportunity to go to a
clinical trial site.
And it's not just medicationtrials, right?
Yes, those are great as well,but there's also things for, you
(21:06):
know speech therapy, physicaltherapy, occupational therapy
all of these differentopportunities and a lot of times
it is things that researchersreally have a question about Is
this going to work for thispopulation of people?
And sometimes these are thetherapies that end up, you know,
making it out into thecommunity and really proving to
be successful and impactfultherapies for patients.
(21:30):
You know, I highly highlyrecommend checking out Clinical
Trials.
Clinicaltrialsgov is amazingand you can find so many
different resources all over thenation.
We've done several and we'veactually stayed at Ronna
McDonald Houses when we doclinical trials.
I think in my daughter'slifetime we spent well over six
(21:50):
months in a Ronna McDonald House.
You know, getting my childtherapy.
She had spinal surgery.
We stayed there.
Clinical trial work Likethere's just.
There's so much good that comesfrom staying at a Ronald
McDonald House.
And again, you get community,you get people who are
experiencing challenges and alsosuccesses and, you know,
(22:12):
getting over hurdles together,and that's important as well.
It's so valuable it's needed.
That's important as well.
It's so valuable it's needed.
It is, it is very needed.
It is absolutely needed.
I think connection and theright treatment options for
people and everyone's going tobe different, and so I think you
know it's your job as a familyto decide what is doable for
(22:32):
your family, what is going to bethe most impactful for your
family, and go from there.
I don't think you knoweverything is going to be
perfect for everyone, but it isworth, you know, looking for
things that could and that arenovel and you know could have
significant impact on the healthand well-being of your child
(22:52):
and your entire family.
Speaker 1 (22:54):
Yes, yes, you contributed to initiatives that
focus on improving health careaccessibility in rural areas.
What are some of the challengesthese families face being
further away and how are youworking to address them,
especially with well, reallyacross the board, I would say.
Speaker 2 (23:11):
For certain things like respite care, almost
anywhere you go, it's prettychallenging to find respite care
, but in rural areas there'seven more of a hurdle because
there often aren't doctors,hospitals, therapists close by,
(23:31):
and so a lot of people just gowithout.
Traveling is expensive, can bevery expensive.
That is hard.
One of the benefits to ourNeurology Social Services
Network and our Family SupportProgram is that it doesn't
matter where you live.
We can connect you to resources.
Anywhere in the nation.
(23:52):
We can get you financialassistance.
There's even telehealth therapyfor occupational therapy and
things along those lines now, sotelehealth is really
contributing to being able tomake some of these therapies
more accessible as well.
One of the things that wereally saw in rural communities
is that they want to, they haveto trust you, they want to know
(24:15):
that you are there to supportthem and they want to actually
know who you are.
Who is it that's providingthese services to our families?
One of the best things we didis go into the community.
Go into the community, have anevent for them, provide
education along the way, givesupport while you're there,
because when you develop thoserelationships with people who
(24:38):
can get them the things thatthey are in need of.
Relationships are incrediblyimportant and you know we have
to get back to you know meetingpeople where they're at, instead
of expecting people to goelsewhere for that care.
And we can do that, especiallyat the Trinerology Foundation.
Like I said, having our networkif you have a cell phone or a
(24:59):
phone attached to a wall, itdoesn't matter.
We can connect you with otherresources that are out there.
Now you can ship thingsanywhere.
You can provide financialassistance in a variety of
different ways.
We're able to get into thoseareas a little bit more and
connect those people to a largercommunity.
(25:20):
The other thing, as I said,about going into the community,
you're kind of pulling peopleout of their houses and meeting
other people in the communitythat have similar needs.
When you do that, you'recreating community within the
community.
That is important.
Making sure that kids withunique needs are included in
sports activities orrecreational activities, that
they're going to theseafter-school events, that
(25:43):
they're made accessible for allfamilies that's really, really
important.
I think going into thecommunities is number one.
I know that's hard for somepeople, but I think people want
to be around other peopleultimately, and they want to
feel connected to people.
I think it's kind of mostly inour nature to want to find other
people who are experiencingsimilar things.
(26:03):
If we can get into communitiesand show them that we understand
their challenges, we havesolutions for those challenges.
That's even better for them.
Speaker 1 (26:12):
Could you explain, because I'm sure there's
listeners out here that are notfamiliar with some of the terms
that I have discussed, likerespite care?
Would you mind talking aboutwhat these terms mean?
Yeah, sure.
Speaker 2 (26:24):
So respite care is essentially someone who comes
into your home, or there aresome organizations where you can
drop your child off for aperiod of time so that someone
else can care for your child andgive you a break.
Someone else can care for yourchild and give you a break.
We as human beings especiallyif we're dealing with trauma or
things that are reallychallenging, over and over and
over again, it starts to impactour mental health.
(26:45):
Sometimes, getting a couplehours of a break is super, super
beneficial and can reset you.
That's really the point ofrespite care.
My daughter has an amazingrespite care provider that comes
in and not only does she giveus a break, but she also teaches
my daughter different skills.
She'll bring her out into thecommunity.
(27:07):
My daughter is really fearfulof things that are high, like
buildings that have highceilings, so she'll take her to
those buildings and help hercope and work through some of
those things that she is fearfulof.
It can really help your familyholistically Help the child
learn new skills, but also helpyou get a breather.
Maybe you want to go getsomething done.
You want to go to the grocerystore by yourself?
(27:27):
You can do that when you have arespite care provider.
Let's see some of the otherterms.
I may have said CIMT, that'sconstraint induced movement
therapy.
That is when you actually castyour non-affected side to force
you to use your affected side.
That is a form of therapy thathas shown to kind of rewire the
(27:49):
brain and really get kids tostart utilizing their side that
is more difficult for them touse than the other.
That's common with hemiparesis,when one side of your body is
weaker than the other.
What other terms have I said?
I know we've talked a little bitabout clinical trials.
Just most of the time,participating in clinical trials
it's really where a researcherhas a hypothesis.
(28:11):
They want to test it, and seeis what I think.
I suspect this may happen, butI want to test it and I want to
see, and so you know, just foran example, in my daughter one
of my daughter's therapies theywere testing to see.
You know, if they casted onehand, what is the progress they
would make in the right hand.
One of the things they actuallyfound, though, is that it
(28:32):
actually improved the left handas well, the one that was casted
.
So the the non-affected side,and so mind-blowing Something
that came out of research thatthey never anticipated happening
.
They didn't predict that, butthey were really, really
surprised by those findings andit's encouraging and exciting to
(28:52):
let those things happen.
But you just never know withclinical trials, you don't know
what the outcome is going to be,and so it is a test.
It is simply a test.
A lot of these tests have goodthoughts behind them.
They're not just random.
They don't come out of nowhere.
A lot of times there arepredecessor trials that lead up
to that, up to that clinicaltrial, and so they want to try
and see the effectiveness oftheir hypothesis and whether you
(29:16):
know it is going to bebeneficial if they release that
treatment option to the entirecommunity.
So it's exciting to be a partof a clinical trial.
One of the things you do have tothink about is the cost
associated with it.
Even though they are free mostof the time, there are costs
associated as far as taking offtime from work or travel time.
Those kinds of things that youhave to think about, and these
(29:39):
are actually things thatresearchers are getting a lot
better about thinking about andare compensating families for
their time.
Many are, and so that's a goodsign because they value the time
of the patients.
That's important to note,because time is limited, it's
always hard to come by time.
It's nice when someone doesreimburse you for the time it
takes, but there can be benefits, obviously to the patient as
(30:00):
well, if the therapy iseffective or the treatment
option is effective.
Speaker 1 (30:04):
Exactly Some of the terms and some of the programs,
of course, we're not going to befamiliar with because, hello,
we didn't have a rare kiddo or arare condition.
Exactly In the work that you do, do you sit down with these
families and explain to themokay, this is what the illness
(30:25):
is.
We're going to learn more andthese are what your options are
within the programs.
Speaker 2 (30:30):
We do Absolutely.
One of the other things that wehave created and we're actually
updating and adding a lot moreconditions is our disorder
directory.
It has a ton of differentdisorders in there and it has
signs, symptoms, therapy thatmay be recommended.
It has advocacy organizationsthat you can get connected with
(30:52):
as well, so it is one of thefirst things that comes up when
you Google a condition.
It'll have our disorderdirectory on there.
We take a lot of pride in that,because we actually saw someone
who posted on social media aprintout of our disorder
directory on there.
We take a lot of pride in thatbecause we actually saw someone
who posted on social media aprintout of our disorder
directory page and said this iswhere I learned about my child's
condition, and we were like yes, thank you, like we're so happy
(31:14):
that you utilized that resourcefor your child and we hope that
that's the beginning for you,right?
There's even more informationout there, and the thing about
rare conditions is that they'reever-changing, they're evolving,
we're finding out more and moreinformation, we're getting more
treatment options, and so it'sreally important to be connected
to these advocacy organizationsbecause oftentimes they're
(31:35):
working directly with theresearchers and they know the
best treatments.
So, even if you just get ontheir newsletter, you'll be up
to date on some of the thingsthat are happening in your space
and be able to take advantageof some of the new therapies and
treatments that are availablefor your family and, if nothing
else, you're also able to findsupport groups and you're able
to find other people who you canconnect with as well.
(31:58):
So it's really important, Ithink, to get as much
information, to fill yourselfwith as much knowledge about the
condition and also do what youcan do.
I think it's unfair to saybecause it says here that I can
do this therapy and that therapyand that therapy that you have
to do it all.
It can be overwhelming andthat's not good for anyone,
(32:19):
right?
So there are times when we haveto step back and go what can I
do?
Right now?
Speaker 1 (32:26):
I'm going to do the thing that I can do right now,
and later I'll do somethingmaybe different, but that's okay
, there's services within theorganization that support the
families, but then you also areaware of these other
organizations that they can getinvolved with that probably
offer family services.
Now you're looking at all theseoptions of support and support
(32:47):
groups, like you said.
Speaker 2 (32:48):
Yeah, absolutely.
We have a partner calledCourageous Parents Network and
they have a wonderful resourcecalled Neurojourney.
That's another resource that wereally guide people to, because
it is an extensive look atdifferent conditions from a lot
of different perspectives.
So a gastro perspective, sodiet, how do things move through
(33:09):
your body?
It can be from just like aschooling perspective too right,
does it impact your eyes?
Does it impact your learningCognition, what is it that it
impacts?
And Neurojourney does a greatjob of breaking down different
conditions so that it'sunderstandable to the average
person in multiple languages,which is fantastic as well.
(33:32):
We have the Pediatric EpilepsySurgery Alliance as a partner
and they have and I'm sayingthis as a former intervention
specialist or special educationteacher they have one of the
most incredible school resourcesI have ever seen.
If you are going through theIEP process, if your child is on
an IEP or gets additionalinstruction from a speech
(33:54):
pathologist or an occupationaltherapist or a physical
therapist at school or needsacademic testing, whatever that
may be they have you set withtheir resource.
I mean, they literally willtell you what goals that could
potentially help your child.
They really help you understandthe process and that's
wonderful.
Your child doesn't have to haveepilepsy surgery to benefit
(34:16):
from their school resource, so Ihighly recommend going to them
for anything educational.
They have a wonderful wealth ofresources on their website.
Speaker 1 (34:26):
Thank you for sharing about that.
We're going to talk aboutpatient engagement Now.
You serve on the FDA's PatientEngagement Collaborative and
Advisory Committee positionsthat play such a critical role
in bridging the gap betweenfamilies and healthcare systems.
What insights have you broughtto these platforms and how do
they influence change?
Speaker 2 (34:45):
Great question.
So whenever you have somethinglike a patient engagement
collaborative or an advisorycouncil, you're really looking
for the insights from patients,their challenges, their
struggles, things that theyreally want to make.
They want someone to help themmake improvements in certain
areas, and so I think what theFDA has done with some of these
(35:05):
collaboratives is they haveallowed patients to have a seat
at the table to voice theirconcerns, to say, hey, we really
would like to see this happenor hey, we can work together in
these ways.
One of the things that Ipresented on through the Patient
Engagement Collaborative isdecentralized clinical trials.
That is a lot.
(35:25):
It basically just means aclinical trial that is not
housed in a traditional locationlike a hospital.
So, for instance, maybe thetherapist comes to your house
and the therapy is virtual andit's not in that hospital
setting.
So that's decentralized.
It's not always going to occurin the same location.
So that's one of the things.
The other thing that is reallyneat about these collaboratives
(35:47):
is that different professionalsfrom different areas join
together and share theirexperiences and find ways that
they can collaborate together tomove the needle forward.
I think whenever we're workingtogether we get further.
When we are just kind of siloedinto our own individual disease
states.
We move a lot slower, we don'tgo as fast.
(36:08):
So the more commonalities wecan find amongst each other, the
more we're going to be able tomake progress, to make change
that's impactful for patients.
So, you know, I think it'sreally important what the FDA
has done in creating thesecouncils and PCORI.
They do a lot as wellpatient-centered, a lot of
(36:28):
patient-centered clinical trialwork to really move the needle
forward and have patients withlived experience, people with
lived experience engaged in, youknow, clinical trials and in,
you know, making treatments andtherapies that patients want and
that patients need, instead ofjust looking at it from a
research side and saying, whatdo the researchers want to work
(36:50):
on today?
Right, it's really involvingthe people that are going to be
impacted by it, because if thosepeople don't care about that
therapy that you're researching,it's not going to be utilized.
It's not going to be utilized,it's not going to be beneficial.
So we've got to put things outthere that make a difference for
patients.
I think you know it's reallyimportant.
It was really important for meto also hear from the FDA how
(37:12):
their system works, because it'shard to understand sometimes,
being a patient that there arelimitations amongst you know
some of these organizations andthere are ways that we can work
together to move past some ofthese limitations, or ways that
we can be creative together toget around some of these
limitations.
Right, but whenever we have thesystems and the people working
(37:34):
together, that's when the realchange happens.
It can't happen separately.
It has to happen together inorder to make a big impact for
the community.
Speaker 1 (37:43):
Yes, absolutely, I could not have said it any
better Edited parenting andbalance With all of your
advocacy, work and professionalcommitments.
How do you balance this withbeing present for your family,
especially your daughters?
Speaker 2 (37:58):
Yes, this is difficult, very, very difficult,
especially because, as I saidearlier, my life and my work are
kind of intertwined and somepeople say that's not healthy.
It is healthy for me because Ifeel like I'm doing something to
help my family and familieslike mine.
So for me it fuels me.
It really does.
It makes me work really hardwhen I'm at work.
(38:19):
But I have had to get a lot ofcoaching from my bosses about
stepping away.
I am so fortunate to work at anorganization that talks the
talk and walks the walk as faras taking care of yourself.
If my daughter's in thehospital or there's something
going on that's big or impactful, they literally say step away,
(38:43):
step away, take care of yourself.
They mean it, they live by thatand follow that, so they model
that as well.
I've now worked at a foundationfor three years and I for the
first time checked out duringour two-week shutdown at the end
of the year.
It took me that long to learnto just check out for a period
(39:03):
of time and I spent more timeplaying games with my children
and puzzles.
We love to do puzzles anddifferent things, making
memories, and so I had to learnto compartmentalize a little bit
better rather than it allweaving in and out together At
our work.
We have time to volunteer.
If I need to volunteer at mydaughter's school for a party or
(39:24):
something I can do that, I canstep away.
I'm supported to do thosethings.
I think employers need to knowtheir employees need to know
what they have going on and theyneed to provide opportunities
for people to take care ofthemselves.
If you're an adult, I think youcan manage that right.
You can decide for yourselfwhen you need to walk away and
(39:45):
when you're just giving your alland you are good to go right.
But sometimes getting that restand that rejuvenation is gonna
make you do better work.
That's really, really importantand our leaders truly do
believe that at our organization.
That really helps.
With my personal life and takingcare of my daughters.
There are times where I've hadto work a little bit.
Later at night, when we haveeducational courses, my
(40:08):
daughters will sometimes come inand sit and listen.
I think it has opened theireyes even more so that there are
people like them out there inthis world, that not everyone
has a perfect life and that weall have challenges.
We all have struggles and wecan do something about it too.
There are resources, there arepeople to connect with that can
(40:30):
help us live a fuller life andreally be the best people that
we can be.
I do.
I talk about my work with them.
I invite them in to listen tothe things that I do, because I
think I want them to dosomething that is going to
benefit the world.
I want them to help people whoare like them and different from
them.
I think the best way to do thatis to model it for them.
(40:52):
And what does that mean andwhat does that look like for
people?
If I can model it, maybe theywill follow in my footsteps a
little bit and help people, andmaybe they'll go a different
path, and that's fine too.
I just want them to be kindpeople that are caring about all
kinds of people.
Speaker 1 (41:08):
It sounds like an incredible place to work.
You get to help people, you getto help your daughters and you
get to show them what it's liketo be an amazing support system
to others.
Speaker 2 (41:18):
Yes, there's beauty in that there is, and I think
everyone needs someone that theycan lean on.
I want them to realize it'sokay to lean on other people,
because we can't do everythingalone.
I don't want them to beisolated.
I want them to make connectionsand I want them to find support
that they need when they needit.
So I try to model that for them.
I try to live that for them,hopefully it works.
Speaker 1 (41:39):
Catch up with me in 10 years.
It's so true.
I think that most parents feelthat way, don't we?
Speaker 2 (41:44):
Yes, for sure.
Speaker 1 (41:48):
For families who might be listening today.
What advice, what encouragementwould you offer as they
navigate their own healthcarejourneys and advocacy paths,
whether it be for themselves orfor their children?
Speaker 2 (41:59):
I think one of the things that I have learned along
the way is to just take onestep at a time.
So a lot of times it's easy tolook at the big picture and get
really overwhelmed and thinkwhat's going to happen.
You know, 20 years from nowwith my child, and I think we
have to stay in the here and now.
(42:21):
We have to make sure that whatwe're doing now will support
them moving forward.
But we can't get overwhelmed bythis is coming up and this
milestone and they're not goingto meet this or that.
Love them in the moment.
Love them for who they are nowand find the positive in who
they are right now.
And also give yourself grace,because you're not going to do
(42:43):
everything perfectly at everystep of the way and you
shouldn't second guess yourself.
Just keep moving one stepforward.
Do the next right thing thatyou need to do in the moment and
give yourself grace along theway.
You're doing the best that youcan and your child is going to
be okay.
Your child is going to be allright.
(43:03):
We can't fret about you knowwhat 20 years brings.
Speaker 1 (43:07):
You believe in making every moment count and leaving
a positive impact that shows,through everything that you say,
what continues to fuel yourpassion and drive for this work.
Speaker 2 (43:17):
Without a doubt it's my children.
I think you know I've alwayshad that passion.
Obviously I went into specialeducation initially, but helping
other people so that they don'texperience the same challenges
that we've experienced.
If I can make it better for thenext person, then whatever
challenge I went through wasworth it because someone else
(43:38):
can benefit from it.
So for me it is making thingsbetter for those around me.
If I can teach someonesomething that I've learned
along the way, why not?
I want someone else to havethat same information that I had
and use it to work for theirfamily if it helps along the way
.
Speaker 1 (43:55):
This is the fun and the personal.
On a lighter note, I know youlove reading.
Do you have a favorite bookrecommendation, either for
learning or just purely forpleasure?
Speaker 2 (44:05):
I have one that I just read that was so
fascinating to me.
It is actually called Brain onFire.
It is about this reporter forthe Post who had a rare
condition that I don't want togive away too much, but the
(44:26):
condition impacted her andcompletely changed who she was,
and it took doctors quite sometime to figure it out to the
point she almost died but didn't, and she lived to tell about it
and they were able to gettreatment for her.
But that book is wonderful.
And then just another onethat's not in the neurology
space that I have loved isactually a series.
(44:46):
Are the Hunger Games?
Totally off, but I just thinkthat is a fascinating concept
and just kept me on my toes atall times.
So I love to read.
So I have lots of books thatare, you know, are good ones
that I've read in the past, butthose are the ones that kind of
are on top of my mind right now.
Speaker 1 (45:06):
Those are some good ones.
I love to read too.
I think I love all kinds ofbooks.
You're going to find me readingeverything from a adventure to
romance to something moreserious.
I actually just looked up Brainon Fire because I felt it
sounded familiar, and it does,because it's actually a movie
too yes, yes, I have not seenthe movie yet, so I'm really
(45:29):
excited about that, but it's.
Speaker 2 (45:31):
I'm really really excited to watch the movie.
I hope the movie is really,really good.
I have a love-hate relationshipwith watching movies after
you've read the book, or viceversa, I don't know.
I always end up, I think,liking the books more.
Speaker 1 (45:47):
We tend to want to kind of pick apart the movie
afterwards and be like, okay,you forgot this, this and this,
this was important.
Why did you destroy thisAbsolutely?
Speaker 2 (45:59):
Yes, absolutely Good recommendations recommendations,
I think.
Speaker 1 (46:03):
For anyone that's listening to this, I'm going to
give you a little snippet.
Here's the summary.
It says a rare autoimmunedisorder popularized by the
autobiography movie brain onfire is triggered by an attack
on the mda receptors.
The disease occurs whenantibodies attack mda receptors
in the brain, leading to memoryloss, intellectual challenges or
(46:25):
changes, seizures and evendeath.
Speaker 2 (46:28):
Yes, it's wild.
She was completely typical andthen transformed into a
completely different personbefore she had treatment.
So it is absolutelyunbelievable.
It just goes to show how trulyremarkable the body is and also
how cool our healthcareprofessionals are for being able
to figure out something so rarein a timely way, you know, in a
(46:51):
timely manner.
So she got the help that sheneeded quickly and that's what's
important she lived to tell thestory.
Speaker 1 (47:00):
The story is mind boggling, yes it is Absolutely.
Speaker 2 (47:03):
You will hear some wild things that she did during
that time where she doesn'tremember an entire month of her
life and tore her family apart.
So you can really relate to asa caregiver, because watching
your child go through somethingso horrific and at some points
not having medical professionalsbelieve you is really
(47:24):
challenging.
It can be devastating.
It goes through all of that andit's fascinating.
Great book.
Highly recommend it and I'mgoing to watch the movies.
Make sure you let me know whatyou think, okay, I will.
Speaker 1 (47:35):
Well, kim, it's been an honor to have you here and to
share all of your expertise,along with some of your personal
journey.
I feel like we barely dippedour toes into the waters and I'm
sure we're going to have tohave you back to discuss more.
What I want to leave listenerswith is don't be afraid to reach
out.
Don't be afraid to reach outand ask some questions and just
(47:58):
say I'm drowning right now and Ineed some help.
I know that Kim would be happyto talk with you and help you.
Speaker 2 (48:03):
Absolutely yeah.
Reach out anytime.
You can email us at programs atchildneurologyfoundationorg.
I check that every single day,so feel free to reach out there.
You can also go to our websiteand fill out an assistance
request form.
If you need support or help,we're happy to help you.
That's what we do, that's whatfuels us, so give us fuel.
Speaker 1 (48:27):
Yes, now remember, listeners, that your story
matters, your voice matters andtogether we are stronger.
Until next time, don't forgetyour spoon.
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