I AM ALS Turns 6: Community Teams Inspiring Change

Welcome to "I'm Dying to Tell You," where we shine a light on resilience and hope.  In this special episode, we’re celebrating six years of I AM ALS, an organization created for patients, by patients.

Why is this so important? Because for far too long, those most impacted by ALS weren’t leading the charge in our collective mission for a cure. But I AM ALS changed the game. By putting patients at the forefront, they are not only better equipped to serve the ALS community, but we’re operating on the ALS clock—pushing for accelerated progress every single day.

Today, I’m thrilled to chat with four incredible volunteers, Tim Abeska, Randy Gregory Jr., Cristy Hardin & Deb Winters about how I AM ALS continues to be driven by patient voices, advocating, empowering, and fighting to make ALS a thing of the past. We'll dive into the work of the I AM ALS Community Teams, their ongoing efforts, and how YOU can get involved in this powerful movement.

So, listen in and be inspired to join these teams of patients, caregivers, and advocates who prove that the impossible is possible—every single day.  Thank you for sharing this celebration.  Hugs, Lorri

Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Episode Transcript

Lorri Carey (00:00):
Hi, I'm Lori, your host of I'm Dying to Tell you
Thank you for being here.
So if you've listened in overthe past years, you have
definitely heard me talk about IAm ALS, the patient-led,
patient-centric organizationmade up of people who have a

(00:25):
heart for finding treatments,finding cures for ALS and just
making life with ALS a littlebetter, however possible.
However possible.

(00:54):
I am ALS has really shown theworld the power of ordinary
people doing extraordinarythings with one common goal.
So today I wanted to celebratethat I am ALS has just turned
six years old and highlight someof the people that are driving

(01:16):
change in the ALS communitythrough I am ALS and,
specifically, their communityteams and what's really, really
impressive about I am ALS intheir life, whether they are

(01:50):
living with ALS or taking careof someone with ALS.
They are leading initiatives,they are heavily involved and
even those that have lost theirperson to ALS some have decided

(02:16):
to stay in the fight just tohelp others.
So I thought it would be greatto bring on four people who are
involved in I Am ALS and justshare a little bit about what
they have done and, moreimportantly, what is on the

(02:38):
horizon plans for 2025 and howcan you get involved and really
help to push those initiativesforward.
Okay, let me back up and saythat I am ALS was founded by

(02:59):
Brian Wallach and his wife,brian Wallach and his wife,
sandra Abravaya, and Brian wasdiagnosed with ALS at 37.
And he and his wife, sandraworked for the Obama
administration and that'sactually where they met and so

(03:22):
when Brian was diagnosed andthey looked around and they were
like what is available?
What do we need?
What do we need?
They identified this great needpatient-led community.
So, man, they had the skill setand they had some contacts and

(03:43):
they put together thisorganization, which has grown
into thousands and thousands andthousands of people who have
been involved and are supportinginitiatives that, whether it is
changed with legislativeaffairs or clinical trials or

(04:06):
taking an idea like Lou GehrigDay and bringing it to reality.
So I thought it would be greatto catch up with some other
people that are involved withthis movement and hear a little

(04:29):
bit about the community teamthat they're each involved in,
what they have accomplished and,more importantly, what is on
the horizon and how can you getinvolved.
Whether you are in, whether youhave an ALS connection or not,

(04:53):
you are welcome and definitelycan make a difference.
So I'm excited to jump on thisZoom call with Randy Gregory and
Deborah Winters Both have ALSand also Tim Aveska, who lost

(05:18):
his dear wife, marianne, to ALSas well, to ALS, to ALS, as well
To ALS, and Christy Harnon, whoand Christy Harnon, who was a
caregiver for a dear friend andlost him to ALS as well your

(05:43):
friend, and lost him to ALS aswell.
Okay, let's go on over to ourchat.

(06:06):
Okay, let's go on over to ourchat with Randy, deb, christy
and Tim.
Let's go, let's go, thank you.

(07:55):
Thank you well, thank you, guysfor agreeing to do this.
Hello, randy, yeah, I, I'vebeen running like crazy and I
knew I wanted to do this episodeand didn't know how I was going
to do it and fit it in, so I'mreally, really happy that you
guys all agreed to jump in lastminute.

(08:17):
So, thank you, so so much.

Cristy Hardin (08:20):
Of course I'm happy to do it.
Of course I'm happy to do it.

Lorri Carey (08:22):
Yeah, so I really just want to highlight, you know
, the different community teamsand give examples of some of
those teams, what has takenplace, but, more importantly,
what's on the horizon and howcan other people get involved,
because I feel like everyone hassomething to contribute and,

(08:48):
you know, you don't know whatyou don't know, and so some
people might think, well, youknow, I don't have enough skills
to bring to this group, andthat is definitely not the case,
and I love just the variety ofpeople that are driving change
and are pushing forward newideas, that come from all

(09:12):
different backgrounds and alldifferent skill sets, like all
of you.
All right, why don't you justtell me a brief introduction and
why you are involved, christy?

Cristy Hardin (09:30):
So my name is Christy Harden and I joined
IAMALS in January of 2024 as avolunteer.
I was the primary caretaker forone of my very best friends who
was diagnosed with ALS inFebruary of 2021.
And he was single, had nochildren, didn't really have any

(09:52):
family who could support him.
So I relocated temporarily inMarch of 2023 to be his primary
and for a long time onlycaretaker, and I lived in
Houston with him for sevenmonths before he passed in
October of 23.

(10:12):
After several months of just notbeing able to get myself out of
bed and depression for losingsomebody that was so close to me
, I randomly came upon I believeit was a Facebook blast looking
for folks to get involved withIMLS.
So I reached out to someone inJanuary of 24 and quickly jumped

(10:33):
in with both feet arms, head,everything and I became the
co-chair for our Lou Gehrig Dayteam, as well as our Scribes of
Strength writing team, where Iserved for several months.
And then, in August of 24,there was a position opened and

(10:54):
now I'm an employee of IMLS andI couldn't be happier because
the IMLS community gave me thesupport and the love that I
needed to get through the griefthat I was going through.
So I'm just so grateful foreverybody, not only that works
at IMLS, but for amazingcommunity members such as
yourself, tim, deb, randy,everybody because it just really

(11:15):
being with a group of folks whowent through or have gone
through or are currently goingthrough what I went through as a
caretaker has really beenhealing for me.
And then working with peoplelike Deb and Randy and Lori
yourself, who are living withALS just is everything that my
heart needed to get throughlosing Kurt to horrible disease.

Lorri Carey (11:39):
Well, you, you're super special, Christy.
I mean, it wasn't your spouse,it wasn't your family, but it
was a friend and like for you tohave the commitment and the
heart to take care of someonewith this disease.
It's just says everything towho you are, so I really
appreciate you.
So, randy, do you want to gonext?

(12:01):
Can you share a little bitabout your journey with ALS and
what inspired you to join theMany Shades of ALS team?

Randy Gregory Jr. (12:12):
My name is Randy Gregory Jr.
I was diagnosed with sporadicALS in 2011.
I wanted to be involved withthe ALS community to help others
on this journey.

Lorri Carey (12:26):
Thank you so much, randy.
Thank you for being here, andif you're tuning in and you're
not familiar with ALS, let mejust say that one thing that ALS
can take is your ability tospeak.
So Randy is joining thisinterview and using a speech
generating device, so that'swhat you're hearing here.

(12:50):
So, randy really appreciate allthe extra effort that you're
putting in to be a part of this.

Deb Winters (13:06):
So, okay, after 14 months of searching for an
answer of what was going on withmy body, I originally got
involved with a different ALSorganization, but last year was
introduced to IAMALS and wasblessed to be able to

(13:31):
participate in the summitplanning.
And when my husband, mycaregiver and I were at the
summit last year, the very firstnight afterward after the
meeting, howard looked at me andhe said honey, I think you

(13:53):
found your tribe and I love that.
I felt exactly the same way.
Um, the mission and the goalsand the patient centric, the
organization, the peopleinvolved, the ability to both

(14:13):
receive and give encouragementand support has been phenomenal.

Lorri Carey (14:19):
Yeah, well, I'm glad you're here and I know what
you're saying about likefinding your tribe.
You know, when I was diagnosedalmost 21 years ago, I was like
connect me with someone that isgoing through this as well.
So now there's just a communityand, with social media being
what it is today, it really isvery comforting to find and have

(14:42):
a community.

Cristy Hardin (14:43):
So, yeah, and I and I agree with you, deb, 100%,
because going through the ALSjourney with Kurt, we didn't
have a tribe.
He was one of those patients.
He didn't want to learnanything about ALS, he didn't
want to know what was coming, hedidn't want to see anybody.
We went to the clinics and thatwas it, and so I didn't really
surround myself with others whowere on the same journey as me.

(15:06):
So finding this group of peopleis exactly right, deb.
It's the tribe that I wassupposed to be in.
Yeah, yeah.

Lorri Carey (15:13):
Yeah, yeah, okay Tim.

Tim Abeska (15:16):
So my name is Tim Abeska.
I am an ALS widower.
My wife, marianne and I began aneurological odyssey in 2011,
which led to her diagnosis inFebruary of 2012 with
Parkinson's disease, which waslargely controlled with
medication such as drop foot,and an atrophied calf had

(15:47):
manifested themselves, and thatled to an ALS diagnosis in July
of 2015.
She passed away before IAMALSwas formed on New Year's Day
2019.
And I met an ALS widow andgrief group who connected me up
with with IMLS, and four yearsago this month, I began serving

(16:08):
as a volunteer advocate for theorganization.
It was a natural for me to jointhe veterans team, because Mary
Ann was an Air Force veteran.
It was also a natural for me tojoin the community outreach
team.
I'm now co-chair of both ofthose teams.
And one of the initiatives fromcommunity outreach that you were

(16:28):
heavily involved in, Lori, wasthe Lou Gehrig Day initiative
and that spawned its own team,of which I am also a member.

Lorri Carey (16:38):
Yeah, I know that you have incredible leadership
and organizational skills thatwe are benefiting from, so don't
go anywhere.

Tim Abeska (16:53):
Well, thank you for.
Thank you for characterizing myOCD as leadership and
organization, not that he's anoverachiever.

Lorri Carey (17:04):
Hey, we'll take it.
We'll take it.
Okay, in the chat I see thatRandy has something to add to
that, so Randy, go ahead.

Randy Gregory Jr. (17:12):
When diagnosed with sporadic ALS in
2011, I had no idea what ALS wasand what my future was with it.
I did know that I was going tofight the terminal diagnosis to
my last breath.
I had a teenage son and twominor children to finish raising
.
Over the past 14 years, als hasstolen all of my physical

(17:37):
abilities, but it has strainedme in many ways.
God has blessed me to witnessmy five children to grow into
adults, motivated to join I AmALS.
By the documentary For Love andLife no Ordinary Campaign.
I discovered the many shades ofALS.
Teen Not having a person ofcolor who I could dialogue with,

(18:01):
I wanted to be available forother people of color have a
dialogue with.

Lorri Carey (18:06):
I wanted to be available for other people of
color.
Thank you for being here andsharing that.
Why don't we go ahead and staywith you for a little bit, Randy
?
So what unique challenges doyou think that people of color
face when navigating ALS care,and how is your team coming

(18:28):
together to address those?

Randy Gregory Jr. (18:31):
The most unique challenge I think people
of color face navigating ALScare is clinical trial
information.
The ALS community has beengreat to me for identifying the
services and resources available.
I did not receive knowledgeableinformation about clinical
trials until I joined IAMALSapproximately seven months ago.

(18:55):
The Many Shades team isplanning to educate people of
color about clinical trials,open label extension and
expanded access programs and theidentity of specific gene
mutations.

Lorri Carey (19:10):
Yeah, and I know that there are not only
challenges with people of color,but also, geographically, areas
that are more out there andthey are not getting.
They don't have access to someof the ALS clinics and care that

(19:34):
they need as well.
What things are that ManyShades of ALS team doing to
bring attention to those needsthat you're talking about?

Randy Gregory Jr. (19:45):
Since I have been involved I have learned
about the let's Talk About itBiner Series the Many Shades
team has been conducting.
The series has been wonderfulin bringing attention to the
needs of underrepresentedcommunities impacted by ALS and
supporting those communitiesimpacted by ALS and supporting

(20:07):
those communities.
Others in the ALS community,people impacted by ALS and those
serving to raise awareness forALS and working to identify a
cure.
Researchers, pharmaceuticalcompanies, als organizations,
als clinics and veteranhospitals can help the Many
Shades team by helping to growthe population of people of

(20:30):
color that we can serve andassist in educating this
population of the clinical trialenvironment about kind of being
alone or isolated, because herfriend Kirk wasn't wanting to be
like in a community of otherswho had ALS.

Lorri Carey (20:51):
So, from your perspective, what message would
you like to share with otherswho are living with ALS,
especially people of color, whomay feel isolated throughout
their journey?

Randy Gregory Jr. (21:06):
The ALS community is here to help every
person living with ALS.
You are not alone.
We fight this horrific diseasetogether.
I know firsthand the challengesthis journey presents.
Much like a successful businessand sports team, we can beat
the obstacles with a group ofpeople working towards a common

(21:28):
goal.
Be a member of the team.

Lorri Carey (21:31):
Yeah, and I think all of us here can speak to the
fact that you're not alone andwhat coming together with other
people who are going through thesame thing that you're going
through like the power of thatand I think that's why I am ALS
has been so successful inachieving goals that they have

(21:56):
set is because everyone is thereto support each other.
So, yeah, okay, as far as themany shades team goes, from
their social media campaigns tothe mental health series, what

(22:17):
project or moment has been themost impactful for you since
you've been a part of that team?

Randy Gregory Jr. (22:25):
The let's Talk About it series.
Two of the discussionsNavigating Spirituality and
Faith in ALS and TerminalDiseases and Spirituality and
Faith in ALS and TerminalDiseases has been the most
impactful for myself becausespiritual leaders with and
without a connection to ALSparticipated and provided

(22:48):
different perspectives of aspiritual connection to ALS and
terminal diseases.

Lorri Carey (22:56):
So, chrissy, would you know if there's a link out
there that I can post in theshow notes to that series that
he's referring to?
Absolutely, yep, I will get toyou, okay, great.
So my list to my listeners.
I'll put in the show notes somelinks relative to what we're
talking about today and you canfind those links in my show

(23:17):
notes, which are on facebook andthe website, both at I'm Dying
to Tell you Podcast.
So, randy, as the teamcontinues to host events and
build collaborations, whatexcites you most about the

(23:38):
future of the Many Shades of ALSteam?

Randy Gregory Jr. (23:43):
The team is working towards collaborating
with others in the ALS communityto increase the number of
people impacted by ALS fromunderrepresented communities to
be included in the fight.

Lorri Carey (23:56):
Okay, great, all right.
Well, thank you for officiallya staff member of I Am A-List
now, but you've had your handsin a lot of things, gary Day

(24:19):
team, because that initiativehas become national program,
something fun and a realawareness builder in our
community.
So you want to tell me a littlebit about what is going on, or

(24:41):
even like what is Luke Eric Dayfor people that might not know.
So Lou Gehrig.

Cristy Hardin (24:47):
Day started as a ALS awareness initiative within
the Major League Baseball groupand I'm going to tap Tim because
he'll know when that startedofficially as Lou Gehrig Day.
It's typically around June 2nd.
Some of the baseball teamsdon't always do their Lou Gehrig
Day Awareness on the 2nd ofJune, but somewhere around there

(25:08):
they do that, and so it startedas an initiative to bring
community members together inthe different cities where these
MLB teams live, and it's anopportunity for community
members to learn about ALS, tobe part of the awareness
initiative.
So it's not just focused on LouGehrig.
They bring folks.
Different stadiums and differentteams will bring folks living

(25:32):
with ALS onto the field to behonored.
Sometimes they'll have a familymember help throw out the first
pitch.
They'll have ALS members beinghonored on the field and last
year we had about 2,000community members join across
the country for Lou Gehrig Day.
So we had various teams willeither have just something in

(25:57):
the stadium for folks to be partof.
Some communities would gettogether and have a pre-game
meetup with other folks livingwith or impacted or affected by
ALS meet up before the game,either in the parking lot or
nearby pub or restaurant, and itwas just a really great
opportunity for folks to gettogether to meet one another

(26:19):
because, as we learned, a lot ofRandy pointed to this a lot of
our community members out thereliving with ALS raising
awareness be part of a reallyimportant initiative in sports.

Lorri Carey (26:52):
Yeah, yeah, and I know that June 2nd was chosen
because that's the day that LouGehrig died of ALS.
It's also my birthday birthday,which probably has nothing to
do with it.
Well, we could say that, right,right, but, yeah, oh, go ahead.

(27:14):
Sorry, no, no, no, I was justgonna say it's just a fun event
for you know, people to cometogether, and it's a great way
to bring people into ourcommunity.
You know, introduce people toALS that haven't been touched by
it, and so, you know, peoplethat are just going to the ball

(27:34):
game are now learning more aboutALS and hopefully, learning
more about what they can do tohelp find cures for ALS.

Cristy Hardin (27:46):
So yeah, yes, and it's also very interesting
because folks don't realize thatwhen you have ALS, it's very
difficult to just travel, getplaces.
Even some of the fields we did,you know, just as part of the
raising awareness, learning whatada accommodations mean to them

(28:09):
may not necessarily be what ourfolks living with als need, and
randy and I.
He just came to orlando and weattended an orlando magic game
where they did an a the firstever in the nba world.
In Orlando they did an ALSawareness event and their
initial place where they wereputting Randy, who's in a power

(28:31):
wheelchair and and vented,trached and vented, didn't have
a power outlet and it wassomething that they didn't even
think about.
So it's also helping the folksin the sports world realize that
maybe what they have deemed asADA compliant and accommodating
is not necessarily that.
So it's also important for themto understand that.

(28:53):
Oh, good point you look likeyou're about to say something.

Tim Abeska (28:57):
Oh, I was just going to say that the first Lou
Gehrig Day was in 2021.
Okay, yeah, and I have a vividmemory of being at the stadium
in Baltimore when there werelimits on attendance to each
game in major league baseballand everyone in that stadium was
required to wear a mask becauseof the local ordinances.

Lorri Carey (29:19):
Oh, wow, okay, no more of that.
No more of that.

Cristy Hardin (29:24):
So we work with the 30 teams across the country
and our team, the Lou Gehrig Dayteam, that's part of IMLS.
We are there's probably gosh136 people signed up as part of
our community team here and foreach team we will ask somebody
to be a team lead.

(29:45):
That means that they're workingwith the MLB directly.
They also work with thestadiums to get ticket links.
They work to get the communitymembers excited, invited and
involved, and so they will alsobe the ones that coordinate the
pregame meetups where they dothem, and they're really our
cheerleaders and they areamazing and we definitely could

(30:06):
not do it without their support.
And both Lori and Tim have beenteam leads for us and, just
again, we could not do what wedo without volunteers that help
support the work.
And then we also, aside fromthe ball games, we started last

(30:26):
year a library campaign where wepartner with libraries across
the country to host ALSawareness events during May,
which is ALS Awareness Month,and last year we had 34
libraries that participated andthey did anything from just
having an end cap display ofbooks related to ALS or Lou

(30:47):
Gehrig.
We supplied from IAM ALS, wesupplied an informational
tabletop poster, we gave themflyers.
So some just did that.
We had others where they didlike an hour long lunch and
learn Zoom call, where we hadsomebody from imals and another
als organization live like lou,come in and introduce folks to

(31:08):
what als is and answer questionsfrom participants who are there
.
We also partnered with uh, thelibrary of congress last year so
we were invited to be part oftheir employee wellness fair.
So we got to set up a table andMichael Lecker from IMLS he's
in our DC office was able to goparticipate in person there and

(31:30):
we're going to be able to dothat again this year.
And we're working on some moreexciting initiatives besides
just putting tabletop displays.
We're thinking about doing somecondensed Tim Lowry panels
which are informational sessionsabout ALS.
Yeah, and we'll invite folkswho are living with ALS to be on
those panels to share with thelay person, because a lot of

(31:54):
folks don't really know what ALSis and you know, like Randy
said, when he was diagnosed hedidn't even know what it was.
Right, right, yeah.
So our efforts are reallycentered on how do we get people
to understand what als is andthat it's not as rare as people
think it is right.

Tim Abeska (32:14):
So people think it's just, you know, oh, it only
affects a couple hundred peoplea year, and it's not that yeah
more yeah, yeah and it's worthnoting that all five people on
this call right now arevolunteers for the Tim Lowry
panel series that is theflagship program of the
community outreach team.

(32:40):
Who was a retired pharmacist inBuffalo, living with ALS, who
felt very strongly that weneeded a vehicle to educate
people.
Last year we did 45 panels andhad audience participation in
the range of 1800 people thatwouldn't have been touched but
for this series.

Lorri Carey (32:59):
Yeah, and I love that so much, tim, and you know
it's like you think about theTim Lowry panels and you're like
that is so obvious, like whydidn't someone think of that,
you know, and it's been sosuccessful and it's pretty
turnkey or you guys have made itturnkey.

(33:20):
But you know, I'm listening toChristy and you, tim, about
awareness, especially with LouGehrig day.
You know, as our populationages, people are going to be
like who's Lou Gehrig?
You know, right, who's LouGehrig?
I don't even know who LouGehrig is, so I really love that

(33:41):
there is something that cankeep his name and spirit.
I mean, what a great guy he was.
If you read books about him andlearn about him, just what a
great person that he was, youknow, and it just keeps that
alive and people talking aboutit.
So I love that.

(34:02):
So, so much.
Um.
So, randy, if you want to shareanything about your experience
in Orlando and if it's easy foryou to create that while we're
talking, let me know and I'llcome back and insert.
You know what that experiencewas like for you.

Cristy Hardin (34:25):
He did a piece for us, lori, that we posted on
our Scribes blog, so I can sharethat with you as well.
Yeah, his son is one of theassistant coaches for the
Orlando Magic, and it was hisfirst time watching his son in
action, so that was exciting.
Oh my God, I'll definitelyshare that piece with you
because it's pretty.

Lorri Carey (34:45):
Yeah, that'd be great Okay.

Tim Abeska (34:47):
I marvel at Randy's versatility and I always wonder
like who?
Who doesn't he know?

Deb Winters (34:52):
because he gets so much so much done.

Cristy Hardin (34:58):
I'd like to add one more thing about Lou Gehrig
Day, lori, we also work.
We have a youth Lou Gehrig Dayteam as well, that kind of spun
out of the the larger Lou GehrigDay, and so this team works
with little league teams acrossthe country to also do an ALS
awareness event.
And so we've got it's a smallerteam but they work with little

(35:21):
league teams across the countryjust like the major league teams
to spread awareness.
And there is a short film thatLori is very intimate with the
Lukey and the lights, and soI've recently connected with
Melinda who is part of thatgroup and they're going to do a
partnership as well this year toshare that film out with the

(35:43):
little leagues.
Because our co-chair, you know,we provide the coaches for the
little leagues a little dugoutspeech to share what ALS is.
And the co-chair of the teamwas saying you can imagine
somebody standing in front of abunch of little kids just
chomping at, champing at the bitto get out on the field to play

(36:04):
baseball.
They're not interested inlistening to a bunch of bullet
points about a disease at all.
So we're hoping this short 11minute film, cartoon film, will
help them engage better and thatthe you know, they can share it
with the parents and theparents can be part of a, maybe
a screening party or something,because he said every year it

(36:26):
gets harder and harder to keepthe attention of these kids that
are just like I'm notinterested.
I'm seven, I'm please don't talkto me about it, right?
So?

Lorri Carey (36:36):
right, right, oh, I love that.
Oh, perfect, perfect tie-in.
So before we continue, I justwant to say that one reason I
wanted to do this episode was toillustrate that if you're
listening and you just have aheart for the ALS community and

(36:57):
the desire for cures to comesoon, there is a place for you
within IAM ALS.
There are several teams we'rehighlighting a few of them and
your skill set simply needs tobe that you want to make a
difference.
So, like Chrissy you weretalking about LeVar Day If you

(37:22):
love a child in Little League,there you go.
If you have a connection with alibrary and you're willing to
take some time to set up anevent, you can be very, very

(37:43):
helpful.
And Tim mentioned the Tim Lowrypanels, where you can make a
phone call to someone that youknow is in med school and set up
a time to do a Tim Lowryvirtual panel with the students.

(38:04):
And it's really you know thatsimple and you can be involved
at any level that you want.
So just know that if you'reinterested, you just simply go
to imalsorg and check out thecommunity teams and I'll put a
link in the show notes thattakes you right where you need

(38:26):
to go.
So okay, dem, yeah, and it wasso nice meeting you in person in
dc, so I'm really happy that Igot to meet you.
Um, so yeah, I know that youare a part of our community
outreach team and you arefocusing on something that's

(38:49):
really really cool the empathydinners.
Tell us a little bit about whatthat is.

Deb Winters (38:57):
An empathy dinner can be what we did.
Let me start there.
Yeah, our empathy dinner was a.
Our board of directors got intouch with a local restaurant
that was a breakfast lunchrestaurant, and they agreed to

(39:18):
stay open and do dinner for us,and so that's was.
We invited people to join us,and when they arrived at the
dinner, they knew this ahead oftime.
It wasn't a secret, okay.

(39:39):
We had the opportunity to draw aslip of paper, and on that
paper was a symptom of ALS.
It could be that you couldn'tuse your dominant arm, it could
be that you couldn't feedyourself, it could be that you

(40:01):
couldn't speak, it could be thatyou couldn't hold your head up
or you were in a wheelchair orneeded a walker, and so the
person was blessed to be able toexperience that symptom during

(40:22):
the time of the dinner.
So for the next hour theycouldn't feed themselves.
They had to have someone feedthem the dinner or they couldn't
speak.
We gave, uh, the people whocouldn't speak.
We gave them a mask to remindthem that they couldn't speak,
but on a whiteboard that theywere able to communicate with,

(40:47):
and and after everyone had theopportunity to eat dinner, we
had a man who is gifted atdrawing people out.
Generate some conversationabout how did it impact you to
live with that disability evenfor a short time, or how has it

(41:10):
changed your thoughts aboutfolks that um have a disability
yeah, wow, so what?

Lorri Carey (41:20):
what are some of the things that they said, that
the participants felt you knowduring that hour?

Deb Winters (41:28):
two different participants and their reactions
stood out to me.
We had one man who came whointended to bring his fiancee we
were like two weeks beforetheir wedding and, um, the bride
decided that she had more onher plate than an empathy dinner

(41:49):
that night, and so he broughthis soon to be stepdaughter, who
was 14, with him and what hedrew was he couldn't feed
himself and the comments that hemade about the emotional impact

(42:10):
of asking a 14 year oldstepdaughter to feed him dinner.
That was overwhelming, I think,for both of them and the um, if
you will, that happened betweenthose two folks.

(42:32):
We had another woman who isvery active in our general
community she's out and aboutand involved in a lot of
organizations who couldn't speak, and when asked how it impacted

(42:53):
her, she held up her whiteboardand it said it's hard to meet
people when you can't talk tothem.
And I took a picture of thatwhiteboard.
It just for anyone who is asocial person, an extrovert, who

(43:16):
loses their ability to speak,to communicate, it's hard enough
just dealing with yourcaregiver and getting what you
need, but to lose that abilityto interact with others in the
way that you're most used todoing it yeah, incredibly
difficult.

Lorri Carey (43:36):
Yeah, yeah.
I would imagine that would havebeen a pretty emotional evening
and you know Christy wastalking about educating kids in
the dugout and using resourceslike looking in the lights, the
film, to have that 14 year oldcome and attend the dinner and

(43:57):
really engage it, you know,really be a part of it.
I was just thinking, wow, howpowerful that would be for
younger people to do exactlywhat you're doing with the
empathy dinner, to reallyexperience a loss at such a
young age.

Deb Winters (44:17):
I think that is very powerful, you know,
impactful for young kids andimpactful because we are
certainly a me first societythese days and to understand
that life is not always me first, but I have to share that I am.

(44:38):
Als has picked up this ball andand, in my opinion, hit a home
run with it.
Within a very short time, therewill be a page that you can go
to on the IMLS website anddownload all that you need to

(44:58):
know except the money and yourcreativity to do an empathy
dinner yourself.
Dinner yourself, um, tips,tricks, do you want to make it
in your home?
Do you want to make it afundraiser?
Do you want to make it, um, ina social group or a civic group?

(45:18):
And all the information thatyou need for that.
In addition to that, we have acouple of examples of high
school kids that have done theirown empathy dinner with peers
or just in general having anempathy dinner, and these kids

(45:44):
are knocking it out of the park,they get it, they are doing it.

Cristy Hardin (45:51):
They are making a difference in the lives of lots
and lots of people at a youngage Deb and Kelly Goodman did an
amazing job putting together atoolkit that she's describing
One of our IMLS volunteers,roseanne Hickman.
Her granddaughter just happenedto be in the room when Roseanne

(46:14):
was listening to Deb describethis empathy dinner at the
summit last year, and so she wasone of the high school students
that took it and ran with it,and she raised about $7,000
doing empathy dinner so andwe've got at least three or four
other high school students whoare planning to do one of these
in short order.

(46:34):
So I can't thank Deb enough forbringing this to IMLS, because
it's just been an amazing wayfor people to learn more about
not just what the disease is,but what, to experience it in
that very real way.
You can't talk, you can't eat.
Experience it in that very realway.
You can't talk, you can't eat,you can't move.
It's just been.
People are like Deb said,people are just loving it and

(46:56):
can't wait to do it themselves.

Tim Abeska (46:57):
Lori.
These various teams are ideaincubators.
Christy's already talked abouthow the Lou Gehrig Day has
extended into the libraryawareness.
There are several members ofthe community outreach and
veterans teams who have ideasthat they have become passionate
about and they take them andrun with them and we give them

(47:19):
the logistical support and insome cases IMLS can give them
financial support.

Lorri Carey (47:26):
Yeah, and that's what I was going to ask, like it
doesn't even have to be afundraiser.
It could be a fundraiser.
I mean you can charge X amountfor the dinner and you know a
little above the cost and makesome money there.
But it can be really simple too.
I mean I'm thinking you justmeet at a restaurant and when
you get to the restaurant, atyour table, you know, there's

(47:49):
your card with the ability thatyou have lost.
So it doesn't have to be super,super involved.
It can be really easy and Ilove that idea.
Like, even with having ALS for20 years, I think it can be
really cool to bring in some ofmy community and do that, and

(48:10):
I'm very fortunate that I'm aslow progressor so I don't have
a lot of the loss that mostpeople have, but it would.
So it'd be really good to givethem a picture of what a typical
ALS case is.
You know Exactly, yeah.

Deb Winters (48:30):
As we all know, much like the Lowry panels,
seeing someone or talking tosomeone with ALS is way more
impactful than reading it and,to take the next step living
with it, even for an hour.
It's even more impactful thanlistening to someone talk about

(48:50):
it.
And so, yeah, chrissy, youmentioned that people that it's
not as rare as people think, andthe number that I've heard, I
think from Tim, actually is thatliving in the United States,
there's about one person livingwith ALS for each McDonald's

(49:13):
that you see, and so that visualimage for me it was profound to
hear that number.
And so you may think there'snot a lot of McDonald'sdonald's.
I happen to think there's morethan enough mcdonald's, um, and

(49:37):
so, if you, you know just whenyou, and also for me, it's a, a
memory jog, a thought jog, thatwhen I see a mcdonald's, I say a
little prayer and just say thatrepresents someone who's living
with ALS and I'm going to prayfor them.

Lorri Carey (49:56):
I love that we were talking about different formats
and empathy dinner, and Iremember being on the call this
week, jacob Wentworth, who losthis mother to ALS.
This is something that he'sdoing and just an example of you
know how you can include thisempathy dinner or lunch into

(50:19):
something.
But he's doing a car show.
It's on may 17th.
He's also doing a silentauction and an empathy lunch and
it is in Davenport, iowa, andI'll put the link in the show
notes to that as well.
But that's just another fun wayto bring in different

(50:39):
communities into our world.
So that's another example ofhow you can include that in
things that you are alreadyinvolved in.
So, okay, tim, tim, tim, youcan talk forever, I know, on all
the things that you're involvedin, that you know.
But I thought it would be greatfor you to talk about the

(51:01):
veterans team, and if you're notfamiliar with ALS, veterans are
twice as likely to get ALS.
They don't know why Veteransare twice as likely to get ALS.
They don't know why.
So our precious veterans are athigh risk to develop ALS.
So I'm so happy that there's adedicated team to meet the needs
of those people.

(51:22):
So Tim, tell me a little bitabout what's going on with that
group right now.

Tim Abeska (51:28):
So, first of all, the team is here to raise
awareness about veteran-specificissues involving ALS, to
educate the public about theconnection between ALS and
veterans and connect veteranswith resources that can improve
their quality of life.
The VA considers ALS to be aservice-connected illness, no

(51:51):
questions asked.
So that means it'spresumptively linked to your
military service.
It doesn't matter when youserved, where you served, what
branch of armed services youserved in.
You are able to get into the VAsystem of healthcare for your
ALS and there are severalmultidisciplinary clinics in the

(52:16):
VA system where those livingwith ALS can go for treatment.
And if anybody doesn't knowwhat those are, they're one-stop
shops where the person livingwith the disease stays in the
same room while they're visitedby neurologists, pulmonologists,
occupational therapists, socialworkers and so forth.

(52:37):
When Marianne was diagnosed atRush University Medical Center
in Chicago and at one of thoseclinic sessions, someone from
the ALS Association came in,found out Mary Ann was a veteran
and said you got to talk to theVA.
Well, on the way home we saidwhat do we need to do that for?
I've got good insurance through, you know where I work, and so

(53:01):
we go back and same person comesin at the next meet, at the
next clinic visit, and says well, did you call the VA?
No, we don't need to.
And they said you really needto call the VA.
Well, we did, paralyzed Veteransof America down in Indianapolis
.
Actually, the representativecame to our home, walked us
through the process, connectedus with the VA and the next

(53:23):
thing you know, we're at the VAclinic in Indianapolis and
Marianne got all kinds ofequipment that probably
insurance either wouldn't havecovered or would have covered
reluctantly.
They supplied a powerwheelchair, an assistive
communication device, a Hoyerlift, ultimately a grant to

(53:43):
renovate our house and a grantthat was applied toward a
mobility vehicle.
So those are tremendousbenefits that are available that
not all veterans or theirfamilies will know about.
So that's one of the thingswe're here to do.
The team developed checklistsfor veterans living with ALS,

(54:05):
planning guides for veteransliving with ALS, resources for
veterans who are newly diagnosed, all of which is intended to
introduce them into the VAsystem so that they know what
benefits are available to them.

Lorri Carey (54:20):
Tim, what is a resource that people are
overlooking the most?

Tim Abeska (54:25):
Who would think that you're going to be able to get
a grant to renovate your houseto make it handicap accessible?
That would be, that would belike the first thing that comes
to mind, probably, and rightbehind it, the accessibility,
transportation.

Lorri Carey (54:40):
I mean yeah, yeah, yeah.

Tim Abeska (54:42):
Because the VA grant paid for about half the base
cost of our van and for theentire outfit and, believe it or
not, when Marianne passed,those were mine.
The VA didn't ask for any money.
When I wound up selling the,you know, when I wound up
selling the van to somebody whoneeded it, the home renovations,

(55:04):
you know were permanent.
So that those are are.
Those are a couple of examples.
The other thing we do is, intandem with the IMLS legislative
affairs team, we advocate forthe passage of laws that improve
lives for veterans ElizabethDole, 21st Century Veterans

(55:28):
Healthcare and BenefitsImprovement Act, which offers a
lot of new benefits to veteransat the government level, and
we're also working on our ownversion of a panel series
focused on veterans issues.
And we actually have one ofthose that we're going to
present in March, I believe.

Lorri Carey (55:48):
Okay, and so what group are you presenting that to
?
What type of group?

Tim Abeska (55:53):
This one will go to the PVA Northwest.

Lorri Carey (55:56):
Oh my gosh, I see that being a whole other
successful initiative for sure.
Yeah, that makes sense.
So what are you guys working onthis year?

Tim Abeska (56:10):
Well, there's at least two initiatives.
One is we are working onsomething that will coming up

(56:34):
with a program to recognizeveteran families who have lost
someone to ALS, analogous to theGold Star Family concept, where
someone dies in battle or dieswhile on active duty.
Als is every bit as devastatinga loss to a veteran family and
we want to come up with a way torecognize them.
We also have a veteran championaward, which was put into place
a couple of years ago torecognize people who go above
and beyond to improve the livesof veterans.
Later this year we'll have anannouncement about the renaming

(56:58):
of that award and a couple ofnew recipients.
Those are a couple of thethings that we're working on.

Lorri Carey (57:04):
Okay, great.

Tim Abeska (57:05):
And I co-chair that team with Lara Gehry, who was a
longtime caregiver who lost herhusband to ALS not even two
years ago.

Lorri Carey (57:15):
And he was a veteran.

Tim Abeska (57:17):
Yes.

Lorri Carey (57:17):
Yeah, Gosh.
Well, I know anyone that'slistening.
If they don't have a connectionto ALS, they probably have a
connection to someone in themilitary.
So how can someone get involvedor what are things that people
can do to support the veteransteam?

Tim Abeska (57:43):
I think the biggest thing they could do, if you are
a veteran who has ALS, if youare a family member of someone
who currently has ALS or whowe've lost to ALS, join our team
, because with the more peoplewe're, a stronger team.
We have more ideas, yeah, andwe can work well together to

(58:06):
advance the veterans' ALS costs.

Lorri Carey (58:09):
Yeah, yeah, absolutely Okay, and I'm on the
website right now.
It's imalsorg.
And then probably, if you punchin community teams in the
search button, it'll pull up andI'll put the direct link in the
show notes.
But it shows you the differentcommunity teams that are

(58:30):
available right now and I sayright now because they continue
to grow out, of ideas andsuggestions and needs that are
identified.
So, youth, lou Guaranty team,scribes of Strength.
So if you have a passion forwriting, lou Guaranty that we've
already talked about manyshades of ALS.

(58:53):
That, randy's a part of thelegislative affairs team.
So if you love being involvedwith Congress and different
legislative affairs, that's agood team for you.
Clinical trial teams theveterans team that Tim was
talking about.
Community outreach, which is amore broader team that includes

(59:18):
outreach, just buildingawareness and bringing new ideas
to light.
And then a thank you squad Athank you squad, so a group of
individuals that are taking thetime to thank people for their
contribution in any way thatthey have given, to make sure
that people are known, that theyare appreciated.

Cristy Hardin (59:43):
So okay, Can I add something to that real quick
?
The Thank you Squad handwritesnotes, so you're not just going
to get an email, you're going toget a handwritten note, and we
recently did something very coolthat Randy was our first person
to do.
We invited folks who are usingeye gaze technology to put

(01:00:04):
together a thank you note thatwe printed on our thank you
cards with a little note thatsays this thank you note was
provided and written by a personliving with ALS using their eye
gaze technology, and so ourthank you squad members will get
a stack of those.
They've already been ordered.
They're beautiful.
They'll get a stack of thosecards that they can just, you

(01:00:25):
know, address and send out sothat the person receiving that,
the donors who are receivingthat, now have a personalized
card from somebody living withALS who's using technology.
So this is an example of someof the things that we're able to
highlight.
They're donation dollars,because we just did a whole Eye
Gaze series that Randy was partof.
That helped educate folks whoare living with ALS who are

(01:00:48):
using Eye Gaze technology to dothings like write thank you
notes, control their wheelchairs, do art, write music, and so
it's just another thing that Iam ALS is doing to support those
living with ALS?

Tim Abeska (01:01:00):
And Lori, while you can't see it on the podcast, I'm
holding up a note that I justhappened to receive in the mail
today, thanking me for adonation I made to support
Jacob's car show.

Lorri Carey (01:01:09):
Oh, perfect, perfect.
Let me circle back because Ithink Randy's ready.
So, Randy, can you tell us alittle bit about your experience
?
The Orlando Magic ALS AwarenessGame recently.

Randy Gregory Jr. (01:01:29):
The Orlando trip was a blessing.
Having the opportunity to put aface to ALS was impactful to
the Orlando and NBA community.
Pleasure to meet Christy andEllen in person and to spend
time with my family and friends.
Special thank you to CoachMosley and other staff members

(01:01:49):
for the Orlando magic.
Without Coach Mosley this eventwould not have happened.

Lorri Carey (01:02:13):
Day has kind of sparked interest in other sports
.
As far as creating Lou GehrigDays, you know, within NBA and
maybe NHL NFL, that's somethingthat's being worked on by
volunteers as well, right, yes?

Cristy Hardin (01:02:24):
So what I'm dying to tell you is that we welcome
new volunteers to.
I Am ALS, and we invite peoplewith any interests, skills,
passion to join us.
Like Tim said earlier, thecommunity outreach team has kind
of become an incubator for newideas, and so one of our very
heavily involved volunteers whois living with ALS, Matt

(01:02:46):
Rochelot who, by the way, is aPulitzer Prize winning
journalist I just recentlylearned that he said could we do
something with the NFL?
So we actually have a team thatstarted as part of the
community outreach team to focuson outreach to the NFL to do
also ALS awareness, and so we'vewe started with a small group.

(01:03:09):
We have since invited nine otherALS organizations to be part of
this initiative and we areworking on getting ready to
introduce this as a spinoff team.
So we're going to do alistening session, invite others
who are interested in beingpart of that work so that we can
reach out into the NFL, the NHL, the NBA, all of the sports.

(01:03:31):
And so it's.
This is just another example ofsomebody had an idea could we
do this?
And now it's grown and, like Isaid, we we've got a group of
nine other ALS organizationsthat we're working with to help
us reach into the NFL, to dothings like cleats for a cause,
or do things like we just didwith the Orlando Magic, where an

(01:03:53):
NFL game or a preseason game ora training camp would highlight
and focus on ALS awareness.
So it's just another excitingthing that we do here.

Tim Abeska (01:04:04):
And another example I want to call out, Lori, is
when Randy mentioned Ellen.
He's referring to Ellen Adcock,who was instrumental in doing
an art show called Artistry ofALS, where the artists were
people living with ALS, and thelast one included interviews
with the artists.
So we do some tremendous things.

Lorri Carey (01:04:25):
Yeah, oh, my gosh.
And we can go on and on and on,and the possibilities and the
ideas are endless, just endless.
So, which is why all thecommunity teams welcome any new
people to jump in, get involved,do what you can, and and

(01:04:48):
christy got us started with thefinal question, um, so I'll go
ahead and pick up there and askyou all what you're dying to
tell us dem.
What are you dying to tell us?

Deb Winters (01:05:01):
I am dying to tell us much what you have said.
Each and every one of us can dosomething.
If you do something, no matterhow small it is, each day, to
make a difference in the life ofsomeone else, you are changing

(01:05:21):
the world.
Make a difference each time youcan yeah, I love that.

Lorri Carey (01:05:27):
My son always tells me slow and steady, mom, slow
and steady, you know a littlebit at a time.
So thank you for that't giveinto the temptation just to
withdraw or check out.

Tim Abeska (01:05:51):
Advocating for IAMALS and for pro bono legal
organizations, which I do as aretired lawyer, has given me a
sense of purpose in retirementand allowed me to reinvent
myself as I rebuild my life as awidower.
I loved my job, but I get moresatisfaction out of volunteering
than I ever have for anythingelse.

Lorri Carey (01:06:12):
Yeah, good point, good point.
And I know it's easy towithdraw and I've seen you know
I have a wall next to me youcan't see it but it's covered
with people that I became veryclose to that.
I've lost to ALS and I look atthe photos and those that got
involved and embrace thecommunity seem to have done

(01:06:36):
better in some ways, you know,and it's not easy for some
people to lean in and share andbe a part of that.
But if you can try, I thinkthat you will be enlightened to
how helpful and how healingcommunity can be.

Cristy Hardin (01:06:59):
So I will echo that too, because I was one of
the people who instantlywithdrew after Kurt passed
because it was just so horribleand terrible and I literally was
having to call people to comeover to hang out with me because
I just was a mess.
And one of my girlfriends inHouston called me on a really
particularly rough day and shesaid you know, kurt would be so

(01:07:21):
pissed off at you for allowingyourself to get to this point.
And it was literally like thenext day I saw the ad or the
post for I'm ALS and I was like,ok, clearly Kurt's telling me I
need to get off my butt andstart doing it.

Lorri Carey (01:07:37):
Oh, wow, wow.
Oh my gosh, Randy, what are youdying to tell us?

Randy Gregory Jr. (01:07:46):
I am dying to share this wonderful experience
of advocating for a cause thatis greater than all of us.
Consider joining a fantasticgroup of people who are fighting
for the same thing you arefighting for.
You will not forget theexperience.

Lorri Carey (01:08:04):
Yeah, thank you, randy.
Is there anything that anyonewanted to add around Many Shades
of ALS?
Just because you know, theinteraction's a little bit more
trickier there, did anyone wantto add anything about what
you've seen or why you feel theMany Shades of ALS team is

(01:08:28):
crucial?

Cristy Hardin (01:08:30):
I can share that.
I did an interview with one ofthe Many Shades volunteers last
year named Melody, and she waslovely.
She lives in.
Oddly enough, she lives inAkron, ohio, and I was born in
Canton, ohio, which is likeright next to each other.
It was cool to meet her, butshe's one of those folks that

(01:08:51):
lives in an area where she knowsno other person living with ALS
.
She doesn't.
I mean, she has a support groupin her family and she just
recently retired.
She was still working when Iinterviewed her last year.
But connecting with the ManyShades team has given her a
sense of purpose as well andgiving her that community that
really bolstered what she hadinside of her.

(01:09:13):
She, she was a minister, she,she was a prison chaplain.
She's just, she has an amazingstory and I can share the link
to her interview with you aswell.
But just meeting her andletting her tell her story
because she didn't have thatanywhere else really opened my
eyes that a lot of the folks youknow blacks and Hispanics and

(01:09:33):
other underrepresented racesthey just some of them, just
like you were saying before,they live in these rural areas
where they just don't have thatcommunity and so having this
group that's dedicated to thatdemographic, I think quite
literally will save people'slives and help them feel
connected and give them apurpose.

Lorri Carey (01:09:54):
Yeah, I love how we've highlighted how valuable
education is.
Again, you don't know what youdon't know, and so all of these
different teams are helping toeducate and build awareness in
some way.
This has been great.

(01:10:15):
Thank you all, so so much.
I know we've only chatted for anhour.
We could go on and on and onand we can delve into the other
community teams as well, but I'mjust so happy that Brian
Wallach and Sandra Aparvaia tookthat leap of faith and created

(01:10:37):
I Am A Analyst six years ago andinvited those who are going
through the darkest time oftheir life to be a part of a
special community and to make adifference with those who are
living with ALS, those in thepast, families of those that

(01:11:01):
have passed and even for futuregenerations.
So thank you to Brian andSandra, Thank you Christy, Tim,
Deb and Randy for chatting, forbeing such active and important
people in this fight.
I admire and just appreciateall of you for being here and

(01:11:26):
for talking today andcelebrating six years of this
special community.
So thank you all, Thank you.

Tim Abeska (01:11:35):
Thank you, Lori no-transcript.

Lorri Carey (01:18:36):
And you know I mentioned Brian Wallach and
Sandra Alvavaya Know that I havetalked to them on this podcast
Probably a couple of a couplethat I have talked to them on
the podcast, that I have talkedto them on the podcast.
So if you go back, you'll findan interview with the founders
of I Am ALS, as well as other IAm ALS as well as other

(01:19:09):
celebration episodes where Italk to other people who are
involved in this specialcommunity, and I didn't get a
chance to bring Brian and Sandraon this time, but I did have a
chance to ask Brian a couple ofquestions that I wanted to share
with you.

(01:19:29):
So I asked him about what?
So I asked Brian what are youdying to tell us about the past
six years of I Am ALS?
And he said since founding I AmALS, we have made changes that

(01:19:53):
will have a lasting impact onpatients living with ALS and
their caregivers.
From securing $1 billion infederal funding to support
clinical trials that helpspeople with ALS to the support

(01:20:17):
and resources that we providedto caregivers.
We have come so far and have somuch more good to do, more good
to do.

(01:20:41):
And then I just asked him,looking ahead this year.
What are you most excited about?
And he said I am excited formore opportunities for patients
with ALS to come forward andhave their voices be heard.
So here's your chance.

(01:21:01):
We have just given you manyways to share your voice and
your talents and your time andbe a part of this and be a part
of this incredible movement.
Again, I'll put the link in theshow notes, but if you go to

(01:21:22):
iamalsorg and search communityteams, you will find a
description of all the ways thatyou can get involved, of all
the ways that you can getinvolved, of all the ways that

(01:21:45):
you can be a part.
Thank you so much for beinghere.
If you want to stay connected,you can find the podcast.
You can find the podcast prettymuch everywhere on social media
TikTok, facebook, twitter,instagram, linkedin and TikTok

(01:22:15):
all at.
I'm Dying to Tell you Podcast.
Okay, until next time.
Know you are loved and notalone.
Thanks for listening.