September 21, 2024 • 30 mins
Ryan Gorman hosts an iHeartRadio nationwide special featuring John Drikell Hopkins, founding member of the Zac Brown Band, who joins the show to discuss his fight to find a cure for ALS through his Hop on a Cure foundation. Also, Dr. Courtney Fitzhugh, Sickle Cell Disease Expert with the National Heart, Lung & Blood Institute, checks in for Sickle Cell Awareness Month to explain the disease, its impact on life, and the latest treatments. Finally, Dr. Christine M. Crawford, Child Psychiatrist & NAMI Associate Medical Director, discusses rising concerns of parents and caregivers who are struggling to navigate children’s mental health.
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Episode Transcript
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Speaker 1 (00:00):
Welcome to iHeartRadio Communities, a public affairs special focusing on
the biggest issues impacting you. This week, here's Ryan Gorman.
Thanks so much for joining us here on iHeartRadio Communities.
I'm Ryan Gorman, and we have a few very important
conversations lined up for you. In a bit, we'll check
in with the National Heart, Lung, and Blood Institute for
Sickle Cell Awareness MOD. Plus we'll talk to a child
(00:23):
psychiatrist about youth mental health. The first to get things started,
I'm joined by founding member of the Zach Brown Band
and Grammy Award winner John Driscoll Hopkins, who's here to
talk about his work in the fight to find a
cure for ALS. John, thanks so much for coming on
the show. And let's begin with your diagnosis with ALS.
(00:44):
Did you know much about the disease before you discovered
you had it?
Speaker 2 (00:49):
I had heard about it now, you know, we all
did the Ice Bucket Challenge in fourteen, and I knew
a little bit about lou Garig and I think what
startled me the most was how quickly ALS destroys your
(01:13):
nerve muscle connection and your motor neurons. I didn't realize
that that it was typically a really fast thing that
is one hundred percent fatal.
Speaker 3 (01:35):
So when I went down the rabbit.
Speaker 2 (01:38):
Hole after my diagnosis, things got dark really quickly, and
I'm I'm starting to feel a little bit better about
it because my progression is slower, But that does nothing
(02:01):
for the fact that we don't know what causes it.
Speaker 3 (02:04):
We don't know how to stop it. There have been
very few.
Speaker 2 (02:13):
Cases where it was either misdiagnosed or someone emerged in
a reversal. So basically, when you learn about this, the
things you learn are three to five year life expectancy,
(02:35):
one hundred percent fatal. And that was a huge shock
to me, and I think a huge shock to more people,
and a lot of people don't know a lot about.
Speaker 3 (02:50):
ALS or.
Speaker 2 (02:54):
The prediction that we expect to see a seventy percent
increasing cases by twenty forty. It's the trend, and we
don't know what's causing it. It could be head trauma,
it could be toxicity in our environment. It could be
(03:17):
microbiome or heavy metals. These are all possibilities, but we
don't have a definitive understanding of what causes ALS.
Speaker 3 (03:29):
Or a motor neuron disease.
Speaker 1 (03:32):
What was the reaction among the rest of the bands
when you broke the news to them that you were
diagnosed with ALS.
Speaker 2 (03:44):
The Zach Brown Band has had my back since the beginning,
and they have all been very supportive of me.
Speaker 3 (03:53):
I think I think.
Speaker 2 (03:56):
Many of them were in the same boat that I
was and had to figure out what that was, and
I quickly explained it to them on a group zoom
with everyone, and we don't do those often, so I
think everyone kind of suspected that it was not going
(04:20):
to be.
Speaker 3 (04:20):
Good, but.
Speaker 2 (04:25):
Instantly everyone flocked to my side, and we have an
incredible fan club that has raised thousands of dollars sometimes
thousands in the show that they donate to our five
(04:46):
oh one C three hab on a Cure, and we
are trying desperately to get as much quality research as
we can paid for.
Speaker 1 (04:58):
How quickly were you able to start to utilize your
unique position again as a founding member of the Zach
Brown Band to raise awareness for ALS and to do
what you just mentioned, start to raise money for a
cure for the disease.
Speaker 2 (05:19):
I was diagnosed December twenty second, twenty twenty one, and
we founded hop on Acure dot org on May of
twenty twenty two, so basically five between five and six
(05:40):
months later we were out there shouting from the rooftops,
and we had video support on the twenty twenty two
tour and the twenty three and we had support this
(06:01):
year when we were out with Kenny Chesney. So we've
been able to spread the word a lot, and by
the end of the year we will have funded more
than three million dollars worth of research, So in a
relatively short time that's pretty exciting for us. And that's
(06:27):
just the beginning.
Speaker 3 (06:29):
You know. We have a.
Speaker 2 (06:31):
Mighty team that is still small, and we're able to
do amazing things with our team, and we hope to
just keep doubling each year and get to where we
can really do some good toward finding a cure.
Speaker 1 (06:57):
The website again is hop on a q dot org.
That's hop on a cure dot org. It's where you
can learn more and offer your support. Have you found
others with als have reached out to you? I find
when I interview public figures, musicians, artists, celebrities who are
(07:18):
dealing with something, it becomes very helpful for them to
connect with others who are dealing with it as well,
especially others who are public figures.
Speaker 2 (07:26):
Yeah, when we started doing our own research, the two
most prominent figures that we discovered were Steve Gleeson and
Brian Walloch, and so we reached out to their teams
(07:49):
very soon after diagnosis. In fact, remember it was December
twenty one, so in March twenty two to the Gleason
Gala in New Orleans with my wife Jennifer, and we
were a little scared, but we were ready to hit
(08:12):
the thing head on. And so just a couple of
months and we were getting advice and picking the brains
of people who had beaten the five year mark. You know,
Steve Gleason was in a chair and on a ventilator
(08:37):
within two years of his diagnosis, and he's he's been
alive and thriving from his wheelchair for the past nine
years or more. And that's inspiring.
Speaker 3 (08:55):
You know. He has a n that I don't know
that I would have.
Speaker 2 (09:02):
I don't know that I would be able to exist
in that capacity.
Speaker 3 (09:07):
I don't know if I have the courage for the.
Speaker 2 (09:12):
Will to do something like that, but I would like
to think that I do. And from thieves perspective, you know,
there's really nothing we wouldn't do for our children.
Speaker 3 (09:30):
So in that way he is.
Speaker 2 (09:36):
He has really been an amazing father to his kids.
And that goes for Brian Wallach as well. Brian worked
on the Obama campaign and has been battling AOS for
(09:56):
seven or eight years, and he was given six months
in the beginning. So, you know, all the things that
we know about this and all the things that we
don't know really don't matter. This is a very different
disease for everyone, and until we find something that works
(10:20):
for everyone, we're not there yet. You know, we've found.
Speaker 3 (10:27):
A cure for.
Speaker 2 (10:32):
Point two. I'm going to get the numbers wrong. Two
percent of familiar O cases. Familial cases are ten percent
of AOS cases. That means it was passed down from
mom or dad, or you have the gene. I'm a
(10:58):
sporadic case, so I am in the ninety percent of cases,
but ten percent are familial, and two percent of those
ten percent have something that's working for them called toe Firson,
and that just lets us know that we can beat it.
(11:21):
You know, ALS is not incurable. ALS is massively underfunded.
So we need to take those little moments where people
have had these victories and expand upon them.
Speaker 1 (11:38):
I'm Ryan Gorman, joined by Grammy Award winner and founding
member of the Zach Brown Band, John Driscoll Hopkins. We're
talking about his work in the fight to find a
cure for als. So John, tell us about your organization,
the work you're doing through that foundation. Everyone can learn
more at hop on acure dot org. Again, that's hop
on acure dot org.
Speaker 2 (12:00):
Up on a Cure is dedicated to funding research to
eradicate ALS and to reverse it. So we started this
in May of twenty two. My wife and my manager
and I were driven to create a five o'h one
(12:25):
C three that we thought a lot of people would
get behind and use it on the platform that we've
built with the Zach Brown Band. So I can't tell
you how how much that has benefited. I know lots
(12:47):
of people who have started five oh one C three
and they're doing incredible work, but it's it's slow going
when you don't have that rocket propulsion into the stages
(13:08):
and the media that we do. So we're really excited
and blessed to have this opportunity to share it with
so many people. We believe that that we have funded
really important clinical trials where we have backed Duke University
(13:34):
and Massachusetts General Hospital and als TDI.
Speaker 3 (13:39):
In Boston, just the name a few.
Speaker 2 (13:42):
And these are the leading research centers in our country,
and there are many more that that have programs that
we are very interested in exploring and getting behind with funding.
(14:03):
You know, when you look at things like like HIV,
right when when I was a kid years ago, you
might remember that used to be an instant death sentence
and if you had HIV, it meant get your affairs
(14:27):
in order, and now it means take this pill, get
on a better diet.
Speaker 3 (14:36):
Do what the doctor says, and you're going to be fine.
Speaker 2 (14:39):
We need to get aos to a place like that,
and and I realized that apples and oranges. But the
way that we need to approach it is to make
it livable and preventable. So we're doing everything we can
(15:00):
to push that and to make it als anything of
the past.
Speaker 1 (15:08):
John Driscoll Hopkins Grammy Award winner and founding member of
the Zach Brown Band. You can learn more about his
organization and hop on a Cure dot org again, that's
hop on Acure dot org. John, thank you so much
for taking the time to come on and tell your
story and talk about this really important issue. We appreciate it.
Speaker 3 (15:25):
Thanks so much. Ryan.
Speaker 1 (15:26):
All right, I'm Ryan Gorman here on iHeartRadio Communities, and
now let me bring in my next guest. I'm joined
by doctor Courtney fits You, sickle cell disease expert with
the National Heart, Lung and Blood Institute. September is National
Sickle Cell Awareness Month. Doctor fits You, thanks so much
for coming on the show, and let's start with an
overview of the work you do at the National Heart,
(15:47):
Lung and Blood Institute.
Speaker 4 (15:49):
Thank you so much for having me so. Of course,
our focus is sickle cell disease, and we're focused on
creative therapies, specifically using a half half met approach. So
traditional approaches the bone marrow transplantation use it used siblings
who are a complete tissue match. But less than fifteen
(16:11):
percent of people with sickle cell disease have a Matt
sibling donor. So with half identical or half match donor transplant,
ninety percent have a parent, a child, or a half
Matt sibling who could serve as a donor.
Speaker 1 (16:22):
And are there other areas of focus for you at
the institute aside from that?
Speaker 4 (16:27):
I also focus on you know, I don't want to
just care the patients. I don't want to just get
rid of their sickle cell disease. I want them to
have a long, you know life, that kind of improved
quality of life. So we're looking at the impact that
this transplant has on their organs and specific and UH specifically,
but also looking at impact on pains and fertility, quality
(16:49):
of life, and then looking for genetic risk factors for
one of the feared complications UH leukemia, which can happen
rarely when the transplant doesn't work.
Speaker 1 (17:00):
So what exactly is sickle cell disease?
Speaker 4 (17:03):
A sickle cell disease is a disease that people can
be born with and it impacts red blood cells. So normally,
red blood cells, which carry oxygen throughout the body, are
shaped like a doughnut and they are flexible and can
easily move through the blood vessels. But with sickle cell disease,
the red blood cells are shaped more like a sickle
or a crescent, and they're stiff, so they can get
(17:25):
stuck within the blood vessels and the organs may not
get the amount of oxygen that they need.
Speaker 1 (17:30):
How common is this disease here in the US, and
who is impacted by the most.
Speaker 4 (17:36):
Approximately one hundred thousand people in the United States are
living with sickle cell disease, and more than ninety percent
of people with sickle cell disease are non Hispanic, Black
or African American, and one out of every three hundred
and sixty five Black or African American babies are born
with sickle cell disease.
Speaker 1 (17:53):
What are some of the signs and symptoms of this disease.
Speaker 4 (17:57):
The most common symptom is severe and debilitating, which can
come out of nowhere. Patients are also frequently anemic, so
they can be tired and have low energy levels, and
it can impact organs. So you can have children that
may have had a stroke or young adults that require
hip replacement because of the damage to the joints. We
(18:17):
have some of our horned dialysis because of the kidney failure,
some with heart failure, some with severe, painful, non healing
leg ulcers. So it really can impact the quality and
the quantity of life.
Speaker 1 (18:30):
What advances have been made when it comes to treatment
options for sickle cell disease, and tell us a little
bit about clinical trials in the role they play.
Speaker 4 (18:40):
For a long time, we only had one drug available
for sickle cell disease, altidok cerea. It's still the best
drug that we have, and it's been shown to decrease
the frequency of these acute painful episodes. It's been shown
to increase hemoglobein decrease the red cell transpeasion requirement, and
it's also been shown to improve survival in some studies.
But now in the last decade, we've had three new
(19:04):
drugs that are FDA approved, and there's a lot of
clinical trials that are ongoing with other drugs that are
being studied, and there's also new careative approaches. So I
talked about the type of bloomer transplant that I do,
but just last year, gene therapy and gene editing were
FDA approved as scared of options for sickle cell. Clinical
trials are really important in helping to develop safe and
(19:26):
effective new treatments and potential cares for sickle cell disease.
So we really appreciate patients enrolling on clinical trials.
Speaker 1 (19:33):
Where can everyone go to learn more about all of this?
For Sickle Cell Awareness.
Speaker 4 (19:39):
Month, they can go to sickle Cell dot n h
l B I dot NIH dot gov to find resources
for patients and their loved ones, as well as information
on treatments and clinical trials that are available for sickle
cell disease.
Speaker 1 (19:53):
Doctor Courtney fits you, sickle cell disease expert with the
National Heart, Lung, and Blood Institute. Again, September is now
National Sickle Cell Awareness Month. Doctor Fitzheugh, thanks so much
for taking the time to come on the show. Really
appreciate it.
Speaker 4 (20:06):
Thank you for having me, and thank you for what
you're doing to increase sickle fel awareness.
Speaker 1 (20:09):
All Right, I'm Ryan Gorman here on iHeartRadio. Communities. One
of the biggest issues facing families across the country youth
mental health. A growing number of children and teens in
the US struggling with mental health conditions, and fifty percent
of all mental health conditions start to appear before the
(20:29):
age of fourteen. So to learn more about all of this,
to step us through, what to watch for, how to
address these concerns if they come up. We're joined now
by child Psychiatrists and National Alliance on Mental Illness Associate
Medical Director, doctor Christine M. Crawford. She's author of the
new book You Are Not Alone for Parents and Caregivers.
(20:52):
Doctor Crawford, thanks so much for taking a few minutes
to come on the show and talk about this really
important issue that again, so many FA families are dealing with.
The statistics are really alarming. So your book is coming
at a really good time, and let's begin there. Tell
us a little bit about what you were trying to
get across in this book.
Speaker 5 (21:14):
Yes, so thanks so much for having me. Now, this
book is a comprehensive guide for parents or caregivers, for
any adult who's invested in the mental health of their kids,
how to support their mental health development. You know, kids
are struggling and caregivers are also struggling. That's how to
support them. So this book talks about how to talk
(21:36):
to your kids about mental health to recognize whether they
have a mental health problem or if their behavior is
typical for kids of their age. And let me go
through all the different mental health conditions, the most common ones,
you know, talking about how they manifesting kids as young
as three all the way up to eighteen. And I
also interviewed over eighty people, including a reult who happen
(22:01):
to be teachers, parents themselves, young adults, and kids who
share their wisdom about what has been helpful for them
along their mental health journey. So this book covers so
many different topics and I love that as a one
stop reference for families so they can better support their
kids' mental health.
Speaker 1 (22:20):
Can you give us an overview of the work that
you do at the National Alliance on Mental Illness and
the mission of that organization, which everyone can check out
at NAMI dot org.
Speaker 5 (22:34):
Yes. So, NAMI is the country's largest grassroots organization dedicated
to mental health and supporting and improving the mental health
of people across the country. We have a series of
mental health educational workshops as well as support groups for
individuals living with mental health conditions, but also for their
(22:56):
family members, for their caregivers, for their friends that they
can all see learn about how they can better support
mental health. And so this book is a product of
all of the wisdom that's within the NOAMI community. And
so I want folks to know that namias out there
across the country as an amazing resource for people who
(23:17):
are struggling with their mental health.
Speaker 1 (23:19):
So when I was introducing you, I alluded to how
big of a problem youth mental health has become in
recent years. But you're certainly in a much better position
to break that down for us than I am. So
can you give us an overview? What are we dealing
with here in this country?
Speaker 5 (23:36):
Yeah, so, what we have seen over the years is
an increase and rates of depressant anxiety. And what's really
concerning is that we're seeing the early signs and symptoms
of pretty serious mental health conditions and kids who are
very young, as young as five years old, and so
really concerning that kids are struggling at a young age
(23:58):
and they have difficulty accessing help and support that they
need because there are a lack of child mental health
providers across the country. So kids are struggling, and they're
also struggling accessing the help that they really need.
Speaker 1 (24:12):
So I'm sure we have some parents listening right now
who are concerned about their child's mental health. What tips
do you offer up in this book, which again is
called You Are Not Alone for Parents and caregivers.
Speaker 5 (24:24):
Yeah, so the first thing that I tell parents is
that they should take the time to notice their child.
It's sounds like such a simple thing, but we live
such busy and saft case lives that the car is
for us to appreciate subtle changes in our kids' mood
and our and their behaviors. But if we start to
notice pattern of change, for us to be curious about
(24:46):
what might be behind some of those changes, to sit
down and engage in a conversation with your kids from
a place of curiosity rather than making assumptions about why
they might be behaving differently. It's so kids like, well,
I've noticed that you don't seem to be as interested
in hanging out with your friends, or I've noticed that
(25:07):
you are a little bit more moody. What do you
think is behind that? And they can reveal to you
what their lives are like, what sort of inner thoughts
that they may have, and that could give you a
better sense as to how you can be support them
rather than just making assumptions about what's going on with them.
Speaker 1 (25:23):
Do you have any tips for how to initially approach
that conversation, because I'm assuming that can be perhaps a
bit intimidating for some parents.
Speaker 5 (25:31):
It's important for parents to know that they do not
have to be mental health experts to engage in conversations
with their kids about mental health. And they also shouldn't
worry that by talking about mental health issues that they're
planting the speed for the kids to develop issues later
on in life. It's important for us to lean into
(25:52):
these conversations and not be afraid of getting it right
all the time. It's possible you may make some missteps,
you may say the wrong thanks. There's an opportunity for
you to learn about how you some better support them.
If you did say the wrong thing, you can act
it seems like there was a misstep there. I might
not have said that properly. I hope that I've rephrased
(26:13):
that differently, or what could be helpful that I can
offer you in this moment. And so I think that
parents really need to know that they don't have to
get it right. They may get it wrong and that's okay.
Really about connecting with your kids at the end of
the day.
Speaker 1 (26:27):
I'm Ryan Gorman, joined by child psychiatrists and National Alliance
on Mental Illness Associate medical Director, doctor Christine M. Crawford.
She's the author of the new book You Are Not
Alone for Parents and caregivers. Are there some behaviors that
parents and caregivers should watch out for to get a
census to whether or not their child is dealing with
(26:50):
mental health issues?
Speaker 5 (26:52):
Yes, so there's a concept in the book that I
talk about that I call the distressed radius, and what
that is is understand it's the problem that you're seeing
in your kids. Is just an issue between you and
the kid, or an issue that's only seen in the home,
or is this something that's interspering with other domains of
(27:12):
their life that go beyond the walls of the home.
Are we seeing challenges in school? Are we seeing challenges
in their interactions with other adults or with other kids?
Are they having a hard time functioning? And that's really
what is the main thing. It's understanding. Are these behaviors
getting in the way of this kid's ability to function
(27:33):
outside of the home. And if that is the case,
and certainly seeking out traditional support is warrented.
Speaker 1 (27:40):
In this book, do you address some of the whys
why we're seeing such an increase in these different mental
health issues among children and teens.
Speaker 5 (27:52):
Yeah, so, I certainly talk about a lot of discussors
that kids are facing with, but I also talk a
lot about adult mental health. I talk about how adults
are really struggling to get the help and support that
they need. And in recent years, especially with the pandemic,
we know that a lot of people in this country
(28:13):
are really challenged with being able to get the help
and support that they need to cope with really big,
intense emotions. So I talk a lot about how caregivers
need to take a step back and reflect them their
mental health needs and how their mental health may have
a direct influence on their child's mental health. But I
(28:36):
certainly cover those topics in this book.
Speaker 1 (28:38):
A final question for you, where can everyone go to
learn more about what we've been discussing and to get
this book again? You Are Not Alone for Parents and Caregivers?
Where would they be able to find.
Speaker 3 (28:50):
All of that?
Speaker 5 (28:51):
Yes, so people to go to NONI dot org flash books,
So that's NAI dot org class books, and they can
learn about NAMI and they can also purchase the book
through that website.
Speaker 3 (29:05):
All Right.
Speaker 1 (29:06):
Doctor Christine M. Crawford, child Psychiatrists and National Alliance on
Mental Illness Associate medical Director. She's author of the new
book You Are Not Alone for Parents and Caregivers, which
you can find at NAMI dot org. That's NAMI dot org.
Doctor Crawford, thank you so much for ticket a few
(29:27):
minutes to come on the show. We really appreciate it.
Speaker 5 (29:29):
Thanks much for having me, all.
Speaker 1 (29:30):
Right, and that's going to do it for this edition
of iHeartRadio Communities. As we wrap things up, I want
to offer a big thanks to all of our guests,
and of course to all of you for listening. If
you want to hear previous episodes of this show, we're
on your iHeartRadio app. Just search for iHeartRadio Communities. I'm
your host, Ryan Gorman. We'll talk to you again real soon.
Welcome to iHeartRadio Communities, a public affairs special focusing on
the biggest issues impacting you. This week, here's Ryan Gorman.
Thanks so much for joining us here on iHeartRadio Communities.
I'm Ryan Gorman, and we have a few very important
conversations lined up for you. In a bit, we'll check
in with the National Heart, Lung, and Blood Institute for
Sickle Cell Awareness MOD. Plus we'll talk to a child
(00:23):
psychiatrist about youth mental health. The first to get things started,
I'm joined by founding member of the Zach Brown Band
and Grammy Award winner John Driscoll Hopkins, who's here to
talk about his work in the fight to find a
cure for ALS. John, thanks so much for coming on
the show. And let's begin with your diagnosis with ALS.
(00:44):
Did you know much about the disease before you discovered
you had it?
Speaker 2 (00:49):
I had heard about it now, you know, we all
did the Ice Bucket Challenge in fourteen, and I knew
a little bit about lou Garig and I think what
startled me the most was how quickly ALS destroys your
(01:13):
nerve muscle connection and your motor neurons. I didn't realize
that that it was typically a really fast thing that
is one hundred percent fatal.
Speaker 3 (01:35):
So when I went down the rabbit.
Speaker 2 (01:38):
Hole after my diagnosis, things got dark really quickly, and
I'm I'm starting to feel a little bit better about
it because my progression is slower, But that does nothing
(02:01):
for the fact that we don't know what causes it.
Speaker 3 (02:04):
We don't know how to stop it. There have been
very few.
Speaker 2 (02:13):
Cases where it was either misdiagnosed or someone emerged in
a reversal. So basically, when you learn about this, the
things you learn are three to five year life expectancy,
(02:35):
one hundred percent fatal. And that was a huge shock
to me, and I think a huge shock to more people,
and a lot of people don't know a lot about.
Speaker 3 (02:50):
ALS or.
Speaker 2 (02:54):
The prediction that we expect to see a seventy percent
increasing cases by twenty forty. It's the trend, and we
don't know what's causing it. It could be head trauma,
it could be toxicity in our environment. It could be
(03:17):
microbiome or heavy metals. These are all possibilities, but we
don't have a definitive understanding of what causes ALS.
Speaker 3 (03:29):
Or a motor neuron disease.
Speaker 1 (03:32):
What was the reaction among the rest of the bands
when you broke the news to them that you were
diagnosed with ALS.
Speaker 2 (03:44):
The Zach Brown Band has had my back since the beginning,
and they have all been very supportive of me.
Speaker 3 (03:53):
I think I think.
Speaker 2 (03:56):
Many of them were in the same boat that I
was and had to figure out what that was, and
I quickly explained it to them on a group zoom
with everyone, and we don't do those often, so I
think everyone kind of suspected that it was not going
(04:20):
to be.
Speaker 3 (04:20):
Good, but.
Speaker 2 (04:25):
Instantly everyone flocked to my side, and we have an
incredible fan club that has raised thousands of dollars sometimes
thousands in the show that they donate to our five
(04:46):
oh one C three hab on a Cure, and we
are trying desperately to get as much quality research as
we can paid for.
Speaker 1 (04:58):
How quickly were you able to start to utilize your
unique position again as a founding member of the Zach
Brown Band to raise awareness for ALS and to do
what you just mentioned, start to raise money for a
cure for the disease.
Speaker 2 (05:19):
I was diagnosed December twenty second, twenty twenty one, and
we founded hop on Acure dot org on May of
twenty twenty two, so basically five between five and six
(05:40):
months later we were out there shouting from the rooftops,
and we had video support on the twenty twenty two
tour and the twenty three and we had support this
(06:01):
year when we were out with Kenny Chesney. So we've
been able to spread the word a lot, and by
the end of the year we will have funded more
than three million dollars worth of research, So in a
relatively short time that's pretty exciting for us. And that's
(06:27):
just the beginning.
Speaker 3 (06:29):
You know. We have a.
Speaker 2 (06:31):
Mighty team that is still small, and we're able to
do amazing things with our team, and we hope to
just keep doubling each year and get to where we
can really do some good toward finding a cure.
Speaker 1 (06:57):
The website again is hop on a q dot org.
That's hop on a cure dot org. It's where you
can learn more and offer your support. Have you found
others with als have reached out to you? I find
when I interview public figures, musicians, artists, celebrities who are
(07:18):
dealing with something, it becomes very helpful for them to
connect with others who are dealing with it as well,
especially others who are public figures.
Speaker 2 (07:26):
Yeah, when we started doing our own research, the two
most prominent figures that we discovered were Steve Gleeson and
Brian Walloch, and so we reached out to their teams
(07:49):
very soon after diagnosis. In fact, remember it was December
twenty one, so in March twenty two to the Gleason
Gala in New Orleans with my wife Jennifer, and we
were a little scared, but we were ready to hit
(08:12):
the thing head on. And so just a couple of
months and we were getting advice and picking the brains
of people who had beaten the five year mark. You know,
Steve Gleason was in a chair and on a ventilator
(08:37):
within two years of his diagnosis, and he's he's been
alive and thriving from his wheelchair for the past nine
years or more. And that's inspiring.
Speaker 3 (08:55):
You know. He has a n that I don't know
that I would have.
Speaker 2 (09:02):
I don't know that I would be able to exist
in that capacity.
Speaker 3 (09:07):
I don't know if I have the courage for the.
Speaker 2 (09:12):
Will to do something like that, but I would like
to think that I do. And from thieves perspective, you know,
there's really nothing we wouldn't do for our children.
Speaker 3 (09:30):
So in that way he is.
Speaker 2 (09:36):
He has really been an amazing father to his kids.
And that goes for Brian Wallach as well. Brian worked
on the Obama campaign and has been battling AOS for
(09:56):
seven or eight years, and he was given six months
in the beginning. So, you know, all the things that
we know about this and all the things that we
don't know really don't matter. This is a very different
disease for everyone, and until we find something that works
(10:20):
for everyone, we're not there yet. You know, we've found.
Speaker 3 (10:27):
A cure for.
Speaker 2 (10:32):
Point two. I'm going to get the numbers wrong. Two
percent of familiar O cases. Familial cases are ten percent
of AOS cases. That means it was passed down from
mom or dad, or you have the gene. I'm a
(10:58):
sporadic case, so I am in the ninety percent of cases,
but ten percent are familial, and two percent of those
ten percent have something that's working for them called toe Firson,
and that just lets us know that we can beat it.
(11:21):
You know, ALS is not incurable. ALS is massively underfunded.
So we need to take those little moments where people
have had these victories and expand upon them.
Speaker 1 (11:38):
I'm Ryan Gorman, joined by Grammy Award winner and founding
member of the Zach Brown Band, John Driscoll Hopkins. We're
talking about his work in the fight to find a
cure for als. So John, tell us about your organization,
the work you're doing through that foundation. Everyone can learn
more at hop on acure dot org. Again, that's hop
on acure dot org.
Speaker 2 (12:00):
Up on a Cure is dedicated to funding research to
eradicate ALS and to reverse it. So we started this
in May of twenty two. My wife and my manager
and I were driven to create a five o'h one
(12:25):
C three that we thought a lot of people would
get behind and use it on the platform that we've
built with the Zach Brown Band. So I can't tell
you how how much that has benefited. I know lots
(12:47):
of people who have started five oh one C three
and they're doing incredible work, but it's it's slow going
when you don't have that rocket propulsion into the stages
(13:08):
and the media that we do. So we're really excited
and blessed to have this opportunity to share it with
so many people. We believe that that we have funded
really important clinical trials where we have backed Duke University
(13:34):
and Massachusetts General Hospital and als TDI.
Speaker 3 (13:39):
In Boston, just the name a few.
Speaker 2 (13:42):
And these are the leading research centers in our country,
and there are many more that that have programs that
we are very interested in exploring and getting behind with funding.
(14:03):
You know, when you look at things like like HIV,
right when when I was a kid years ago, you
might remember that used to be an instant death sentence
and if you had HIV, it meant get your affairs
(14:27):
in order, and now it means take this pill, get
on a better diet.
Speaker 3 (14:36):
Do what the doctor says, and you're going to be fine.
Speaker 2 (14:39):
We need to get aos to a place like that,
and and I realized that apples and oranges. But the
way that we need to approach it is to make
it livable and preventable. So we're doing everything we can
(15:00):
to push that and to make it als anything of
the past.
Speaker 1 (15:08):
John Driscoll Hopkins Grammy Award winner and founding member of
the Zach Brown Band. You can learn more about his
organization and hop on a Cure dot org again, that's
hop on Acure dot org. John, thank you so much
for taking the time to come on and tell your
story and talk about this really important issue. We appreciate it.
Speaker 3 (15:25):
Thanks so much. Ryan.
Speaker 1 (15:26):
All right, I'm Ryan Gorman here on iHeartRadio Communities, and
now let me bring in my next guest. I'm joined
by doctor Courtney fits You, sickle cell disease expert with
the National Heart, Lung and Blood Institute. September is National
Sickle Cell Awareness Month. Doctor fits You, thanks so much
for coming on the show, and let's start with an
overview of the work you do at the National Heart,
(15:47):
Lung and Blood Institute.
Speaker 4 (15:49):
Thank you so much for having me so. Of course,
our focus is sickle cell disease, and we're focused on
creative therapies, specifically using a half half met approach. So
traditional approaches the bone marrow transplantation use it used siblings
who are a complete tissue match. But less than fifteen
(16:11):
percent of people with sickle cell disease have a Matt
sibling donor. So with half identical or half match donor transplant,
ninety percent have a parent, a child, or a half
Matt sibling who could serve as a donor.
Speaker 1 (16:22):
And are there other areas of focus for you at
the institute aside from that?
Speaker 4 (16:27):
I also focus on you know, I don't want to
just care the patients. I don't want to just get
rid of their sickle cell disease. I want them to
have a long, you know life, that kind of improved
quality of life. So we're looking at the impact that
this transplant has on their organs and specific and UH specifically,
but also looking at impact on pains and fertility, quality
(16:49):
of life, and then looking for genetic risk factors for
one of the feared complications UH leukemia, which can happen
rarely when the transplant doesn't work.
Speaker 1 (17:00):
So what exactly is sickle cell disease?
Speaker 4 (17:03):
A sickle cell disease is a disease that people can
be born with and it impacts red blood cells. So normally,
red blood cells, which carry oxygen throughout the body, are
shaped like a doughnut and they are flexible and can
easily move through the blood vessels. But with sickle cell disease,
the red blood cells are shaped more like a sickle
or a crescent, and they're stiff, so they can get
(17:25):
stuck within the blood vessels and the organs may not
get the amount of oxygen that they need.
Speaker 1 (17:30):
How common is this disease here in the US, and
who is impacted by the most.
Speaker 4 (17:36):
Approximately one hundred thousand people in the United States are
living with sickle cell disease, and more than ninety percent
of people with sickle cell disease are non Hispanic, Black
or African American, and one out of every three hundred
and sixty five Black or African American babies are born
with sickle cell disease.
Speaker 1 (17:53):
What are some of the signs and symptoms of this disease.
Speaker 4 (17:57):
The most common symptom is severe and debilitating, which can
come out of nowhere. Patients are also frequently anemic, so
they can be tired and have low energy levels, and
it can impact organs. So you can have children that
may have had a stroke or young adults that require
hip replacement because of the damage to the joints. We
(18:17):
have some of our horned dialysis because of the kidney failure,
some with heart failure, some with severe, painful, non healing
leg ulcers. So it really can impact the quality and
the quantity of life.
Speaker 1 (18:30):
What advances have been made when it comes to treatment
options for sickle cell disease, and tell us a little
bit about clinical trials in the role they play.
Speaker 4 (18:40):
For a long time, we only had one drug available
for sickle cell disease, altidok cerea. It's still the best
drug that we have, and it's been shown to decrease
the frequency of these acute painful episodes. It's been shown
to increase hemoglobein decrease the red cell transpeasion requirement, and
it's also been shown to improve survival in some studies.
But now in the last decade, we've had three new
(19:04):
drugs that are FDA approved, and there's a lot of
clinical trials that are ongoing with other drugs that are
being studied, and there's also new careative approaches. So I
talked about the type of bloomer transplant that I do,
but just last year, gene therapy and gene editing were
FDA approved as scared of options for sickle cell. Clinical
trials are really important in helping to develop safe and
(19:26):
effective new treatments and potential cares for sickle cell disease.
So we really appreciate patients enrolling on clinical trials.
Speaker 1 (19:33):
Where can everyone go to learn more about all of this?
For Sickle Cell Awareness.
Speaker 4 (19:39):
Month, they can go to sickle Cell dot n h
l B I dot NIH dot gov to find resources
for patients and their loved ones, as well as information
on treatments and clinical trials that are available for sickle
cell disease.
Speaker 1 (19:53):
Doctor Courtney fits you, sickle cell disease expert with the
National Heart, Lung, and Blood Institute. Again, September is now
National Sickle Cell Awareness Month. Doctor Fitzheugh, thanks so much
for taking the time to come on the show. Really
appreciate it.
Speaker 4 (20:06):
Thank you for having me, and thank you for what
you're doing to increase sickle fel awareness.
Speaker 1 (20:09):
All Right, I'm Ryan Gorman here on iHeartRadio. Communities. One
of the biggest issues facing families across the country youth
mental health. A growing number of children and teens in
the US struggling with mental health conditions, and fifty percent
of all mental health conditions start to appear before the
(20:29):
age of fourteen. So to learn more about all of this,
to step us through, what to watch for, how to
address these concerns if they come up. We're joined now
by child Psychiatrists and National Alliance on Mental Illness Associate
Medical Director, doctor Christine M. Crawford. She's author of the
new book You Are Not Alone for Parents and Caregivers.
(20:52):
Doctor Crawford, thanks so much for taking a few minutes
to come on the show and talk about this really
important issue that again, so many FA families are dealing with.
The statistics are really alarming. So your book is coming
at a really good time, and let's begin there. Tell
us a little bit about what you were trying to
get across in this book.
Speaker 5 (21:14):
Yes, so thanks so much for having me. Now, this
book is a comprehensive guide for parents or caregivers, for
any adult who's invested in the mental health of their kids,
how to support their mental health development. You know, kids
are struggling and caregivers are also struggling. That's how to
support them. So this book talks about how to talk
(21:36):
to your kids about mental health to recognize whether they
have a mental health problem or if their behavior is
typical for kids of their age. And let me go
through all the different mental health conditions, the most common ones,
you know, talking about how they manifesting kids as young
as three all the way up to eighteen. And I
also interviewed over eighty people, including a reult who happen
(22:01):
to be teachers, parents themselves, young adults, and kids who
share their wisdom about what has been helpful for them
along their mental health journey. So this book covers so
many different topics and I love that as a one
stop reference for families so they can better support their
kids' mental health.
Speaker 1 (22:20):
Can you give us an overview of the work that
you do at the National Alliance on Mental Illness and
the mission of that organization, which everyone can check out
at NAMI dot org.
Speaker 5 (22:34):
Yes. So, NAMI is the country's largest grassroots organization dedicated
to mental health and supporting and improving the mental health
of people across the country. We have a series of
mental health educational workshops as well as support groups for
individuals living with mental health conditions, but also for their
(22:56):
family members, for their caregivers, for their friends that they
can all see learn about how they can better support
mental health. And so this book is a product of
all of the wisdom that's within the NOAMI community. And
so I want folks to know that namias out there
across the country as an amazing resource for people who
(23:17):
are struggling with their mental health.
Speaker 1 (23:19):
So when I was introducing you, I alluded to how
big of a problem youth mental health has become in
recent years. But you're certainly in a much better position
to break that down for us than I am. So
can you give us an overview? What are we dealing
with here in this country?
Speaker 5 (23:36):
Yeah, so, what we have seen over the years is
an increase and rates of depressant anxiety. And what's really
concerning is that we're seeing the early signs and symptoms
of pretty serious mental health conditions and kids who are
very young, as young as five years old, and so
really concerning that kids are struggling at a young age
(23:58):
and they have difficulty accessing help and support that they
need because there are a lack of child mental health
providers across the country. So kids are struggling, and they're
also struggling accessing the help that they really need.
Speaker 1 (24:12):
So I'm sure we have some parents listening right now
who are concerned about their child's mental health. What tips
do you offer up in this book, which again is
called You Are Not Alone for Parents and caregivers.
Speaker 5 (24:24):
Yeah, so the first thing that I tell parents is
that they should take the time to notice their child.
It's sounds like such a simple thing, but we live
such busy and saft case lives that the car is
for us to appreciate subtle changes in our kids' mood
and our and their behaviors. But if we start to
notice pattern of change, for us to be curious about
(24:46):
what might be behind some of those changes, to sit
down and engage in a conversation with your kids from
a place of curiosity rather than making assumptions about why
they might be behaving differently. It's so kids like, well,
I've noticed that you don't seem to be as interested
in hanging out with your friends, or I've noticed that
(25:07):
you are a little bit more moody. What do you
think is behind that? And they can reveal to you
what their lives are like, what sort of inner thoughts
that they may have, and that could give you a
better sense as to how you can be support them
rather than just making assumptions about what's going on with them.
Speaker 1 (25:23):
Do you have any tips for how to initially approach
that conversation, because I'm assuming that can be perhaps a
bit intimidating for some parents.
Speaker 5 (25:31):
It's important for parents to know that they do not
have to be mental health experts to engage in conversations
with their kids about mental health. And they also shouldn't
worry that by talking about mental health issues that they're
planting the speed for the kids to develop issues later
on in life. It's important for us to lean into
(25:52):
these conversations and not be afraid of getting it right
all the time. It's possible you may make some missteps,
you may say the wrong thanks. There's an opportunity for
you to learn about how you some better support them.
If you did say the wrong thing, you can act
it seems like there was a misstep there. I might
not have said that properly. I hope that I've rephrased
(26:13):
that differently, or what could be helpful that I can
offer you in this moment. And so I think that
parents really need to know that they don't have to
get it right. They may get it wrong and that's okay.
Really about connecting with your kids at the end of
the day.
Speaker 1 (26:27):
I'm Ryan Gorman, joined by child psychiatrists and National Alliance
on Mental Illness Associate medical Director, doctor Christine M. Crawford.
She's the author of the new book You Are Not
Alone for Parents and caregivers. Are there some behaviors that
parents and caregivers should watch out for to get a
census to whether or not their child is dealing with
(26:50):
mental health issues?
Speaker 5 (26:52):
Yes, so there's a concept in the book that I
talk about that I call the distressed radius, and what
that is is understand it's the problem that you're seeing
in your kids. Is just an issue between you and
the kid, or an issue that's only seen in the home,
or is this something that's interspering with other domains of
(27:12):
their life that go beyond the walls of the home.
Are we seeing challenges in school? Are we seeing challenges
in their interactions with other adults or with other kids?
Are they having a hard time functioning? And that's really
what is the main thing. It's understanding. Are these behaviors
getting in the way of this kid's ability to function
(27:33):
outside of the home. And if that is the case,
and certainly seeking out traditional support is warrented.
Speaker 1 (27:40):
In this book, do you address some of the whys
why we're seeing such an increase in these different mental
health issues among children and teens.
Speaker 5 (27:52):
Yeah, so, I certainly talk about a lot of discussors
that kids are facing with, but I also talk a
lot about adult mental health. I talk about how adults
are really struggling to get the help and support that
they need. And in recent years, especially with the pandemic,
we know that a lot of people in this country
(28:13):
are really challenged with being able to get the help
and support that they need to cope with really big,
intense emotions. So I talk a lot about how caregivers
need to take a step back and reflect them their
mental health needs and how their mental health may have
a direct influence on their child's mental health. But I
(28:36):
certainly cover those topics in this book.
Speaker 1 (28:38):
A final question for you, where can everyone go to
learn more about what we've been discussing and to get
this book again? You Are Not Alone for Parents and Caregivers?
Where would they be able to find.
Speaker 3 (28:50):
All of that?
Speaker 5 (28:51):
Yes, so people to go to NONI dot org flash books,
So that's NAI dot org class books, and they can
learn about NAMI and they can also purchase the book
through that website.
Speaker 3 (29:05):
All Right.
Speaker 1 (29:06):
Doctor Christine M. Crawford, child Psychiatrists and National Alliance on
Mental Illness Associate medical Director. She's author of the new
book You Are Not Alone for Parents and Caregivers, which
you can find at NAMI dot org. That's NAMI dot org.
Doctor Crawford, thank you so much for ticket a few
(29:27):
minutes to come on the show. We really appreciate it.
Speaker 5 (29:29):
Thanks much for having me, all.
Speaker 1 (29:30):
Right, and that's going to do it for this edition
of iHeartRadio Communities. As we wrap things up, I want
to offer a big thanks to all of our guests,
and of course to all of you for listening. If
you want to hear previous episodes of this show, we're
on your iHeartRadio app. Just search for iHeartRadio Communities. I'm
your host, Ryan Gorman. We'll talk to you again real soon.
Host
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