Episode Transcript
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Speaker 1 (00:00):
And welcome to Cindy Stumpo Tough his nails on WBZ
News Radio ten thirty And I'm here tonight with who.
Speaker 2 (00:07):
I have to pull this over? And Sam Samantha.
Speaker 1 (00:09):
Okay, why are we doing it that way today?
Speaker 3 (00:11):
There's no option?
Speaker 1 (00:13):
Okay, this is okay, this is what's going on here. Okay,
I'm gonna get I'm trying to get myself situated. We
had nice face care. Okay, we're back.
Speaker 3 (00:21):
Are you guys from mother daughter?
Speaker 1 (00:23):
Yes, yes, she's the mother daughter. I switched the roles. Okay,
I'm going to now put all the pressure on her. Okay.
Who's in the studio tonight.
Speaker 3 (00:32):
Sure. My name is Courtney Dion. I'm from Boston, mass.
Speaker 4 (00:36):
And I am the co founder, along with my husband,
of the Dean Foundation for Children with the Rare Diseases.
We are a nonprofit focused on raising funds and awareness
for pediatric ultra rare diseases. After the diagnosis of two
of our children with an ultrawar form of muscular distripty.
Speaker 1 (00:56):
So two children and they don't it's a genetic or
it just happens, or it is.
Speaker 4 (01:03):
So we have three kids and no family history of
this at all. But it is what they call an
autosomal recessive gene, so meaning I can carry it in
mind family for years, and my husband carried in his
family for years, and we just.
Speaker 3 (01:16):
Found the wrong person, you know.
Speaker 4 (01:17):
And each one of our children had a one and
four chance of inheriting this disease.
Speaker 3 (01:22):
So two of our three kids have it.
Speaker 1 (01:25):
And they said, you after the first one, obviously explain
that to me. So the first one you have.
Speaker 3 (01:29):
So I'll kind of go through the diagnosis.
Speaker 4 (01:32):
But it's a childhood onset, so it's not like something
that they screen at birth.
Speaker 3 (01:36):
It's not that's something that they see on ultrasounds.
Speaker 4 (01:39):
It's not something that he shows up enough blood tests
unless you're looking for it.
Speaker 3 (01:43):
And it's so ultra rare that it's not on like
the newborn screening panel or anything like that. So my
son was.
Speaker 4 (01:49):
Diagnosed in the summer, at the end of the summer
in twenty twenty two, and you know, after some of
some changes in his strength and his ability.
Speaker 3 (01:59):
I thing was wrong with him.
Speaker 4 (02:02):
I have a background, I as a registered there, so
I kind of just remembered like, oh, you know, some
of these childhood onset diseases happened when you're like six
or seven, not at birth, you know. So we got
him tested and it turned out that he had this
ultrawear form of muscular dystrophe. And through my research, you know,
once we learned that it actually could affect males and
(02:25):
females unlike some other forms of muscular dystrophe. My husband
and I kind of are kind of saw a little
bit of the symptoms that the early symptoms that we
had missed with him in my daughter who was six
at the time, So we got her tested as well,
and she had the same.
Speaker 1 (02:43):
So when she was born, you wouldn't have genetically tested
her for this.
Speaker 3 (02:47):
We didn't know.
Speaker 4 (02:48):
Yeah, we could have, we could have, but we wouldn't
have known. We didn't know until.
Speaker 1 (02:51):
My son was nine, Okay, got it all.
Speaker 3 (02:54):
Right, until the symptoms started showing up.
Speaker 1 (02:56):
See that's why I say we should do genetic testing
with each other before we marry and have children and
bring children.
Speaker 3 (03:01):
This way, I know, it's like if we knew this,
you know, we did.
Speaker 4 (03:05):
That's that's the scary part is like, really, with these
genetic diseases, you know, people these live in your family
lineage for years and years and years unknown.
Speaker 1 (03:15):
So not your your husband, not your mom and dad,
not his mom and dad.
Speaker 3 (03:21):
No, no family history of this.
Speaker 2 (03:24):
Really, what were the early signs that you were seeing?
Speaker 4 (03:27):
No?
Speaker 1 (03:28):
But I want to how you know it's a genetic
if you where do you trace it back to?
Speaker 4 (03:32):
More importantly, so, we haven't done like a twenty three
of me or anything like that on our ancestors.
Speaker 1 (03:39):
Do you know you could? Do you know anything about
your great grandparents?
Speaker 3 (03:44):
Like?
Speaker 4 (03:44):
Yeah, and that's the hard thing too, Like we're all
of this age where like your great grandparents, great great
grandparents are immigrants, you know, so like the family history
is not like one hundred percent you know, documented, It's
like who knows, someone may maybe way back.
Speaker 3 (03:57):
In Ireland had this disease and they.
Speaker 1 (04:00):
Just see you. That's what We're kind of lucky because
I've known up to my great great grandparents. On one side,
I had my great great grandparents. Sammy goes as far
up as her believe or not, till she was six
or seven. Her great great grandfather too, which would have
(04:20):
been papa's father. Do you understand my father, Yes, you're
a papa. And then his father's alive, Yeah, that would
be your great grandfather.
Speaker 2 (04:30):
I don't remember him.
Speaker 1 (04:30):
Though, right, Papa Frank. But my kids were born and
I was born and my ex husband was born with
we all, what's the chances we all have this?
Speaker 2 (04:38):
Well, your side but not Dad's.
Speaker 1 (04:40):
Your father has a too.
Speaker 2 (04:42):
Yeah, but I'm saying I don't know Dad's great.
Speaker 1 (04:44):
Boring past that conversation. So we are they're born with
what I'm born with, and what Joe's born with is
what's it called lip protein? Lipoprotein A, Like, what's the
chances that I knew when I married him he was
going to have it and I was going to have it?
And now both of our kids have it, right, So
they're cholesterol exactly, So.
Speaker 3 (05:04):
That's the same, same idea.
Speaker 1 (05:06):
But it was kind of funny because when she was
like I'd say eight or nine or ten around there,
twelve high school. High school is when I had high cholestero.
She had highcholesterol, Like why she had high cholesterol? Never
had it again? It balanced, but she went through a
period no medication, but that was probably from her having
but they never checked for it. It's just crazy how
(05:28):
you find out so much now about.
Speaker 2 (05:29):
You never had a heart attack, He probably wouldn't have
checked for whatever.
Speaker 1 (05:32):
You have never checked, but he had a he had
a widows that lived through it. But anyways, we'll go
back genetics. Just if we knew, yeah, if we.
Speaker 3 (05:41):
Knew what we knew, If we knew, I know we didn't.
Speaker 1 (05:45):
So he's got to roll it out. Okay, So we
what tell me what you have been doing since both
your children came down. You have this foundation. I want
my listeners to hear. You could have just been a
yeah mom and said, okay, well we have two kids
with MS and we're going to live our lives and
everybody's gonna.
Speaker 4 (06:10):
So you know, after the diagnoses of two of our kids,
we went through the we went through the stages of
grief absolutely, like denialing, the bargaining, depression, acceptance, over and
over again, and we kind of through our research. You know,
there is some science. There's some research for a treatment.
(06:31):
The treatment for something like this would actually be a
gene therapy treatment where they go and replace them the
mutated gene with the healthy gene.
Speaker 3 (06:40):
So there is some science.
Speaker 4 (06:42):
Luckily, the science has come so far in twenty years
whereas if this was twenty years ago that it would
be like literally nothing on the internet. You couldn't even
google it.
Speaker 3 (06:51):
So right when that happened, we kind of we dove in.
We we you know.
Speaker 4 (06:56):
We kind of harnessed our grief and we were like, no,
we need to do something about this. We can't just
sit and wait and let someone else try to figure
this out, you know, if they were going to do
what they would have done already. So we really we
really kind of rallied our community. Our community was all
help asking how can we help?
Speaker 3 (07:13):
How can we help? So we're like, you know what,
let's do something about this.
Speaker 4 (07:17):
So that's when we decided, you know, three or four
months after their diagnoses, that we were going to form
a foundation. We were going to start raising some money,
we were going to start raising awareness, and we were
going to try to really.
Speaker 3 (07:28):
Make a change.
Speaker 1 (07:29):
How weird is this MS that they have?
Speaker 3 (07:33):
So it must do a districtee. It's ultra rare.
Speaker 4 (07:36):
So it's like less than five hundred in the United States,
which is considered an ultraware disease.
Speaker 3 (07:43):
The numbers worldwide, don't cut off.
Speaker 1 (07:46):
What's that, I'm sorry say?
Speaker 4 (07:48):
The numbers worldwide are the same too, like ultraware at
all continents.
Speaker 1 (07:53):
You know, when you think about MS, one name comes
to mind, right, Labor Day weekend, Lewis, Yes, and we
grew up at that. I grew up with that on TV,
like we all grew up with that watching that two
three days of raising money and yep, and who took.
Speaker 3 (08:11):
His was so I don't think they do it. They
don't do a telethon anymore.
Speaker 4 (08:16):
But that was the original fundraising for the Muscular Dystrophe Association.
And they, you know, they have made They've really changed
the landscape in this whole area, like supporting research, finding
finding treatments for it. The thing about muscular dystrophe is
that there are over like forty some types. Our type
(08:41):
is a rare form called limb gird or muscular dystrophe.
So it's not the main one that like most or
the more. It's not the most common one, the second
most common one.
Speaker 1 (08:53):
Do me a favorite. Just hold that, thoughtful woman. We
just got to go off to break I'm sitting stump
when he listens to Tough as Nails on WB's you
will be right back and welcome back to the Toughest Nails.
I'm Cindy STUMPO. When you're in the studio tonight with who,
Samantha and Courtney. Okay, Courtney, pick up where we left off.
Go ahead, I'll stopped you.
Speaker 4 (09:15):
Well, you know, the science has come so far in
the past twenty years, Like it really is remarkable.
Speaker 3 (09:20):
They're able to with gene therapy.
Speaker 4 (09:22):
They're able to, you know, give you a healthy gene
and it goes in to where it needs to go
in the body and replace it.
Speaker 3 (09:32):
So the good that's the good news that you know,
it's twenty twenty five.
Speaker 1 (09:36):
Is that helping Is that helping children? I'm sorry, is
that helping your children right now?
Speaker 3 (09:44):
So it will in the future, it's not there's not
one right now. Well, we need it now exactly. So
that's where we don't have time.
Speaker 4 (09:53):
Why we founded exactly So that is why we founded
the Dean Foundation for Children with Great Diseases because seriously,
this is an unders served community, diere unmet needs. Do
these kids there are children, it's a pediatric disease. So
these children are just sitting there waiting for a care.
Speaker 3 (10:08):
So that's why we really just dove in.
Speaker 4 (10:10):
We're like, you know what, the time is going to
pass anyway, We're going to do something about it.
Speaker 1 (10:15):
Courtney, Can I ask you a personal question? Yes, did
this bring you and your husband close together or pull
you apart at the beginning and then bring you back together.
Like how does a husband not just one but two children?
Speaker 4 (10:30):
I know, I know, it's like that's the thing. It's
me and my husband kind of you know, it's tough.
We're both under monumental stress. But at the end of
the day, only he knows what I'm going through and
vice for ourself. Only I know what he's going through.
And I'm incredibly close with my family. I'm incredibly close
with my sisters. He's incredibly close with his family, But like,
(10:52):
at the end of the day, only he and.
Speaker 3 (10:53):
I know what this pain feels like.
Speaker 4 (10:57):
So while I never wanted to go into business with
him or work with him in any capacity at all,
you know, husband and wife.
Speaker 3 (11:03):
That's a I don't want to work with you.
Speaker 4 (11:06):
Working together on the foundation is definitely a little bit
of a challenge.
Speaker 3 (11:09):
Because it's like, Okay, you do this, I do that.
But at the end of the day, he.
Speaker 4 (11:14):
And I were in this together and only us, only
he and I are going to fight for those kids.
Speaker 3 (11:21):
You know, we can't, we will will. Both of us
would give our lives for them.
Speaker 4 (11:27):
So having that bond has definitely brought us closer together
in the past two years.
Speaker 1 (11:31):
And then you have a third child that's very healthy.
Speaker 4 (11:35):
Yes, he's a good middle So my oldest, Yes, my
oldest is.
Speaker 3 (11:42):
A boy, and my youngest is a girl. And my
son Luke in the middle is healthy.
Speaker 1 (11:47):
And Luke what does he think about everything that's going
on with the older and the younger? Does he? How
old is Luke?
Speaker 3 (11:53):
Luke is ten right now. He's he's such a good boy.
You know, he's such a good helper.
Speaker 4 (12:00):
He helps my son all the time, like always look
it up for him, like, will help pick him up
if he needs to.
Speaker 3 (12:06):
And he's such a trooper. Like the past two years,
we've been traveling NonStop.
Speaker 4 (12:09):
We've been traveling all over the country for medical means,
traveling for conferences, Like we've had to totally change our
whole lives.
Speaker 3 (12:18):
And he is just.
Speaker 4 (12:20):
He's adapted so well, he's coping so well. He's just
such a good boy. And I know this is going
to be hard for him. Have you know, poor middle
child already he's already a middle child.
Speaker 1 (12:31):
Yeah, but he's the many that's going to pick up
a lot of responsibility without even knowing he's doing it.
Speaker 3 (12:38):
You know.
Speaker 1 (12:39):
So he gets to probably that age, the teenage years,
where he goes, Okay, I'm all with my friends. Okay,
this is like, you know, I'm going to have fun.
But I guess, you know, he sees that he's only
known this life right because his oldest sibling had it
than he is younger. Does he have to ask you, you, mommy,
how come I didn't get this at a young age
or anything? Or no?
Speaker 4 (12:59):
Yeah, so so definitely all three of them have asked
why you know, why?
Speaker 3 (13:03):
Why me? And why not live? The kids have asked that,
and Lucas asked, why didn't I get it?
Speaker 4 (13:08):
So right away we kind of had to be like
very transparent with them. You know, they're kids. They need
to know what's going on.
Speaker 3 (13:14):
If you don't explain things, they're going to be anxious
and worrying and stuff. And of course the severity of
this illness is.
Speaker 4 (13:21):
Incredibly scary to chair share with children, but so we
share like what they development developmentally can can handle at
the time. But we try to be very transparent with them.
Speaker 1 (13:32):
Now, how do you get the two around their wheelchairs?
Their wheel chairs?
Speaker 3 (13:36):
Not yet, not yet, they're still walking, which is amazing.
My son's twelve. He's doing really well. It is progressive.
Speaker 4 (13:46):
So from the onset of like when you kind of
notice those first couple symptoms, it gets worse and worse
and worse because it's basically you're born with healthy muscle
and then the muscles when they are under stress, they
just get damaged. So every day is just more muscle
damage and your body can't repair it. So basically it's
just progressive. It's a progressive illness as the years belong.
Speaker 1 (14:07):
But what they don't know where they don't know much
about it. How can they determine, say, well, by fourteen
they'll be at this age and by fifty, well it's
so weird.
Speaker 3 (14:18):
It is rare, but there it is.
Speaker 4 (14:21):
You know, there are patients with it, so they have
they kind of have like a what they call a
phenotype kind of mapped out and it's it's pretty similar
to tudish and muscular dystrophe, which is like the one
that the more common one that.
Speaker 3 (14:34):
Most boys have. So they kind of matter up.
Speaker 4 (14:37):
But it is hard to study because this does have
a lot of variability to it. So some kids might
you know, lose their ability to walk at thirteen.
Speaker 3 (14:46):
Some kids might walk till twenty.
Speaker 1 (14:48):
It's hard to just don't know.
Speaker 3 (14:52):
Yeah, it's hard to tell.
Speaker 2 (14:54):
So are the signs different than boys versus girls question?
Speaker 3 (15:01):
Yeah, a little bit. I would say.
Speaker 4 (15:03):
My daughter's biggest symptom that we knew we had to
test her with was she was toe walker. And you know,
she's done valations she was like two, so that's always
been like her. She's very dainty and box on her toes.
Speaker 3 (15:16):
And a lot of kids walk on the toes too,
it's not like that uncommon, so with.
Speaker 1 (15:22):
You quit everything.
Speaker 3 (15:26):
Those toes.
Speaker 4 (15:27):
So I probably wouldn't have checked her if she was
my first you know, I wouldn't have checked her if
her just that. But my son at around like nine,
So what problemted me to test him was around nine
years old.
Speaker 3 (15:40):
Like we were out.
Speaker 4 (15:43):
All summer together and it was like, you know, they
go to school every day. You don't see exactly what
physical activities they do all day at school, but then
you know, spending every minute with him last summer, I
was like, something is off, Like he can't climb up
a ladder, Like he's having trouble climbing up a ladder
out of a pool, having trouble climbing up onto a
boat like things like that, and I'm like, something definitely
(16:07):
shifted and I just kind of have a gut feeling
that's something was wrong.
Speaker 1 (16:13):
If you don't mind me asking Queney, what did Joe
do pryor like, he spends a lot of time on
this organization. And when you guys married and whatever before
had children. What was his job his full time job
or is it still his full time job?
Speaker 3 (16:26):
It still is his full time job. So he is
a fourth generation.
Speaker 4 (16:31):
Wine and liquor retailler, So his family business has been
a They have five package stores in the Metro West
area of Boston, So he's still he's still runs clothes.
He's he's very busy with that, of course, and he
stays active with that.
Speaker 1 (16:51):
And the kids they go to school. They're not homeschools
to go to school, but you're traveling a lot for
different what doctor's here exactly?
Speaker 3 (17:01):
Yeah, doctors care?
Speaker 4 (17:02):
And then just foundation work too, like there's a lot
of advocacy work that needs to be done.
Speaker 1 (17:10):
Is the company, Quinny, how hard is it to raise
money for this?
Speaker 4 (17:15):
It's really I don't know if you've ever fundraised or.
Speaker 1 (17:19):
Anything, many many, many and too thirty something years of
my life. Yes, and the thing you hate most is
asking people for money, right, It's like, uh.
Speaker 3 (17:31):
I know, and you know, we're so lucky.
Speaker 4 (17:33):
Our community has really rallied like right off, right out
the gate. Our community was so you know, jumped right
on board to help.
Speaker 1 (17:40):
We had when you read your community event, when you
say community, which community, what part of Austin so our
local community.
Speaker 3 (17:49):
I'm from Boston.
Speaker 4 (17:50):
I'm from the city, and my husband's from Newton, So
and then we live on the South Shore now. So
just between the two families, we both have big families.
I think between the two family is we we know
a lot of people.
Speaker 3 (18:01):
I guess I don't know.
Speaker 1 (18:04):
Boston thing, Newton Cohasset, Boston, Newton Co has it at
least for a reason that you can raise money, right,
But it gets to a point where you kind of
start going, oh God, can I call that person again?
Can I call this person again?
Speaker 3 (18:18):
Exactly?
Speaker 1 (18:19):
It's not like you're asking for you You're asking for the
spun that you have. You have enough money for your
own children. It's not what it's about. It's about helping
people that don't have the money to get the resources
they need for their children. Right, So it's trust me.
Speaker 3 (18:37):
I know, it's not like that's what That's what I
try to say too.
Speaker 4 (18:39):
I'm like, it's not a good com me at all,
you know, it's we want to make a change in
this landscape. We want to make a change for this community.
This community's been sitting here waiting for a treatment.
Speaker 1 (18:49):
Okay, hold that thought. We're going right out to break.
I'm sending stumbointing you listen to the Toughest Nails on
WBZ and we'll be right back. And welcome back to
Toughest Nails on WBZ News Radio ten thirty. And I'm
Sindy and I'm here with my daughter.
Speaker 2 (19:01):
Do you have a name Samantha?
Speaker 1 (19:04):
For some reason, we are sharing one mite tonight, okay,
because we have a full studio, so you and I
gotta share. Mike, that's the worst. Usually Samantha's over the year,
like way across from me, which is really good.
Speaker 4 (19:15):
Right now.
Speaker 1 (19:17):
They're great. They're great. I can't think you're going on
all right, but they can they take the glee away something.
Speaker 2 (19:24):
Yes, I know they're great though.
Speaker 1 (19:27):
I like them. They have a glear and I can
see the mean. I put my contact lenses, I can't
see right, but I can see far away. I take
them off now and I can see close still right.
Welcome to getting older. That's such a wonderful thing. Here's
my question. I'm sure you've met many children, right obviously,
and I and because of the hippo law, I'm not
(19:48):
asking you to discuss that. My question to you is,
have your children got to meet other kids that have
exactly their disease they have?
Speaker 4 (19:58):
Yeah, and that has been so impactful. You know, you
see these kids going through the same thing that your
children are going through.
Speaker 3 (20:04):
And for my children to see that they're.
Speaker 4 (20:06):
Not alone has been so impactful. And that's kind of
something that really drives me and Joe. You know, this
is so much more than just our kids. These are
other kids who are you know, out there waiting for
something to happen, waiting for a cure. And they may,
you know, their families didn't choose to go be you know,
(20:26):
do a nonprofit. They some of these families conquered down
and just.
Speaker 3 (20:30):
Kind of settled and.
Speaker 4 (20:33):
Not nothing wrong with that at all, but like, you know,
just different approaches. So that's what it really drives us
at the end of the day, is like we need
to be a voice.
Speaker 3 (20:42):
For children more all these beautiful children that we've met.
Speaker 1 (20:47):
Okay, so do any of these other parents help you
guys that have these that their children have these diseases. Well,
you guys doing all the heath lifting, so I mean.
Speaker 3 (20:56):
The heavy lifting is definitely us.
Speaker 4 (20:58):
But the some of the parents have found ways to
kind of help contribute, you know, with their local communities,
kind of contribute to the Deom Foundation. And then there
are other families that there's a family that has.
Speaker 3 (21:14):
Foundation as well too.
Speaker 4 (21:15):
So they kind of did a lot of work ten
years ago. So they've been a huge kind of leader
for us. You know, we've kind of learned and leveraged
what had worked for them and kind of gone off
their advice and stuff. And they've given us such amazing
advice for our kids too. So kind of things that
we can kind of share along our community when we
(21:38):
meet new patients. Patients are reaching out via our social
media channels every day.
Speaker 1 (21:43):
Now, okay, now, truth and honesty. How many times have
you like just want to run your head through a wall,
go why us? And why why? Yes? And why does
this happen to us? And have that feel bad moment
and then take yourself out and bring yourself back to reality.
How many times have you had a dot?
Speaker 2 (21:59):
Right?
Speaker 3 (22:00):
I mean, of course, I think deep down daily, right, Like?
Speaker 1 (22:03):
But cool, glad, I'm sorry.
Speaker 3 (22:06):
I yeah, I think deep down daily. I have that.
But also I have I have a lot of faith.
You know.
Speaker 4 (22:11):
I think that there is a bigger plan for everything,
and I feel like I was given these children for
a reason. I think that I was also given the
tools to kind of go and bang down some doors
and find a way to make a change. You know,
me and my husband were both very relentless. We're both
very stubborn, which in this sense has really kind of
(22:32):
we kind of use that as a strength. I would say,
you know, we don't take no for an answer, and
that's something that we really.
Speaker 3 (22:39):
Want to drive.
Speaker 1 (22:39):
I hate to tell you, but that's a Boston thing. Okay.
We don't like the word now. We hate the word tomorrow.
Speaker 4 (22:45):
Right.
Speaker 1 (22:45):
So if you're your Tanasi's there and your grass, I
don't like the word tomorrow business. No, No, we're gonna get
done today right tomorrow night exactly. So as long as
you keep you're just like an excavator. I call you
an excavator. You just keep going through walls. You don't care.
You're just going to keep going through and keep going.
Speaker 3 (23:02):
And you know who's gonna fight for your kids?
Speaker 1 (23:05):
Like Noah, No, only the mother and father. That's it.
You can be married, he could be married to somebody else,
but no one's gonna love your kids the way you
love your kids. And that's really the truth. Whether you know,
we can love other people's kids, but just is your kids, right,
So yeah, who said being a mom was easy? Never
(23:26):
made nobody right, No, nobody. That's the truth. But it's
it's nice to see that you and Joe came together instead, okay,
because a lot of times I've seen the stuff your
pot families and I've seen them bring them together. Right,
It's like, but yeah, you guys have to go out
and just have fun, you and Joe.
Speaker 4 (23:48):
I mean, yeah, well we do have to go separate
from the kids for like some some foundation work, so
we use that time to like, really, it's really nice
just by ourselves.
Speaker 3 (23:59):
We had the chance to talk because at home we
give our attention to the kids. Of course, we have
three kids, two dogs, a cat. Like it's a little crazy,
so we use that.
Speaker 1 (24:08):
We have dogs and cats. There too, Yeah, throw it
in the mix. Okay, how much more stress do you want?
Hold on? We have the pedatrician, were the uh vets
and cats flying around the house. Yeah, sounds like a
lot of anxiety to me. I'd rather go to work.
Speaker 3 (24:26):
With.
Speaker 1 (24:27):
So it helps when you come from a big family,
that it does. I'm just sitting here watching you. You're beautiful,
absolutely absolutely stunning, beautiful.
Speaker 2 (24:38):
You really and yeah she smiles.
Speaker 1 (24:41):
She does smile, which like when she when she you
do light up when you smile. But you also see
the pain behind those eyes. But that's me. I can
see both. I see the glassy eyes and I see
the pain behind the eyes, right, which I don't know
a mother that wouldn't feel that way. But right, how
hard is it? I was going to wait till after
(25:03):
our next break, but we can go into this a bit.
How hard you find Well, let me let me take
that back. What are you doing for your fundraises? Because
it's like you got to spend money to make money, right,
and people want to come to Gallas and whatever, and
it's so ridiculous. Just give them money. Like now you're
going to go out and buy address you can get
your makeup done, and he had done, and you could
(25:25):
have donated that money. That's how I see exactly.
Speaker 3 (25:28):
But so that's kind of our approach.
Speaker 4 (25:30):
We have a great team on the foundation and my
husband coming from a business background, he that's his model.
Speaker 3 (25:36):
You got to spend money to make money. So he's
good with that.
Speaker 4 (25:38):
He's really good with like that kind of coaching us
on that kind of aspect. You know, certain things you're
going to have to spend a little money to make money.
Speaker 3 (25:45):
We we do.
Speaker 4 (25:47):
We've had we've had a few really successful events.
Speaker 3 (25:50):
Like what we have a local five k that has we've.
Speaker 4 (25:57):
Run two years now in a row and it's been
you know, four hundre people showed up.
Speaker 3 (26:01):
It's been amazing. It's been a huge turnout. That what
is that because like a walk.
Speaker 4 (26:07):
Run that was great because it really catered to families
and like families could come show up, kids could come
show up, So it was.
Speaker 3 (26:14):
Great to have kids there.
Speaker 4 (26:15):
This important children with disabilities, you know, and it's really
great because it kind of extends back like inclusivity. Kids
are kids are so understanding when they kind of know
what's going on, so they're like, hey, you know, I
know someone who walks a little funny like I'll come
support them great. So that was a really great way
to number one, raise awareness and of course fun raise.
We also had two years in a row, two really
(26:38):
successful golf tournaments, which you know, caters to like more
of the guys side.
Speaker 3 (26:42):
So we're kind of just trying to hit different crowds if.
Speaker 4 (26:44):
You can kind of catch where we're going with at
I do want one once for families. One's more for
you know, the guys who want to come help. We
have a ton of industry partners, We have a ton
of you know, Joe knows a lot of successful businessmen.
Speaker 3 (26:57):
So like that's where they want to come and have fun.
They want to come have fun, they want to come.
Speaker 1 (27:02):
Want like golf, right, so tell them they can golf
and drink. And I just bought it. I can't tell
me how many rounds I have to buy. Just a
nearly foundation, another fifth big foundation that you know in Boston, Cindy.
We need six thousand dollars. I never played a game
of golf my life. Okay, I've never been chased the god.
One time. I think I was throwing the golf both
my end. Okay, yeah, I had six thousand dollars, No problem,
(27:24):
We'll take a foursome, right, So you're right, that's where
men most men love to hang and they go have
their drinks, they've smoke their cigars and they get generous
and then all of a sudden, the pa comes out
and everybody's bidding this and bidding up and yeah, yes.
Speaker 3 (27:40):
Yeah, And then I just just last month we had
it Austin. It was so fun. We had it. It
was like full found amazing.
Speaker 4 (27:46):
We had a casino cruise on the Spirit of Boston
in Boston Harbor. So we had like a casino company
come in so people came on the boat, their tippet
got down like all their chips and stuff like that,
so really big had to buy the ticket to come on.
Speaker 3 (28:02):
And we had like cocktail attires. So it was super fun.
Speaker 4 (28:04):
There was We had like two sixty people come and
it was awesome. We packed the boat really and it
was a huge, amazing turnout, so much fun.
Speaker 3 (28:15):
So I think that that will be like definitely an
inaugural I mean a yearly thing for.
Speaker 4 (28:19):
Us, because people just had a last and everyone's like
next year more time.
Speaker 3 (28:23):
We need more time also too. For the past two
years we have done a Boston ad On team.
Speaker 4 (28:29):
So luckily we are, like I mentioned, we're from the
city of Boston. So luckily we've been able to secure
some vibs and have some runners kind of representing. You know,
in our motto is run for those who can't, because
my daughter says, like, one day I want to run
the marathon, and you know, that's a dream, that's something
that these kids, that's something.
Speaker 3 (28:51):
That they can have some day if we can make
a change.
Speaker 1 (28:55):
You know, gay, let's hold that thought from it. We're
going out to break. I'm Cindy Stumpo and you listen
to Toughest Nails on WVZ and I'm with Sammy and
I'm with Courtney. Will be right back and welcome back
to Toughest Nails. And I'm Cindy Stumpo and I'm here
with Samantha and I'm here with Courtney. And of course
the best conversations always happened. We would go to commercial
and I asked Courtney what she was, and of course
(29:16):
she says, she's a cancer, right, and I'm a cancer.
So as we're looking at each other, I can see
the pain and the happiness in a rise, right, I'm
like because cancer people just I hate that, Like I said,
I hate that would impact but we just feel we
feel it. What are you kids?
Speaker 3 (29:31):
What are there?
Speaker 4 (29:33):
My son's a Libra, which she said total Libra, and
he's like he's just like a dream boy, you know, they.
Speaker 1 (29:38):
Don't want to fight. Go ahead.
Speaker 4 (29:40):
That's my oldest. And then my second is.
Speaker 3 (29:46):
A Leo because a little child though too, so like
it kind of it's kind of funny. He's not like
a true true Leo.
Speaker 4 (29:53):
I would say he's more of a cancer, but he
is July twenty fourth, so I feel like he could
like he's more more cancer.
Speaker 1 (30:01):
So it's warman affection. Yeah, warm affection. But you you
know you you are a very warm person for sure,
and you'll do for the world. But men, when you
had enough, you had enough to there's a breaking point
for you too. But then we're over it in five
minutes and like it never even happened. Isn't that crazy?
Like you can blast off of five minutes and put
(30:23):
it right back in and you're over it and you're like,
let's go for dinner. But the other person's going you
want to go for dinner, like you just flipped out
and freak. Yeah, it's over. It's just nothing like your
box is worse than your bite cancer. Yeah, a threat,
I just threatened. What is your daughter?
Speaker 4 (30:42):
She's aces and oh my god, she is like I'll
just I'll trust today and so sweet, so kind, like
she the girl drama and she's nine too, so I'm like,
oh my god, girl very it starts, yeah, the girl drama.
That's so funny, like like honestly, I'm like, wow, Actually,
(31:03):
God knew what he was.
Speaker 3 (31:03):
Doing, given me only one because this has had like
that dollars ship.
Speaker 1 (31:08):
You should understand her more than anybody because you're auto sensive,
but she just takes to a whole other level without
the but you're out of sensive, but you get somewhat
of a backbone the just like, well, now.
Speaker 2 (31:20):
I know why her middle is the way he is.
Speaker 3 (31:21):
He's Leo.
Speaker 2 (31:23):
So he's very decisive compared to the other two.
Speaker 1 (31:26):
Is he very decisive? Yeah? Yeah, he's a sign fire.
Speaker 3 (31:34):
He takes fair business like he's just like you know.
Speaker 1 (31:37):
So tell us, how can my listeners help you? How
can the stumpos help you? Coney and lay it on thick? Okay,
because sometimes people are very cheap, right, they need to
dig in and I always say this, I don't care
if you give five dollars or you give a thousand dollars,
you have five hundred dollars, you give a dollar, I
(31:57):
don't care. It's it's a it's a cup of stuff, Bucks,
coffee or Donkeys. Right, I'm a donkey, she's a Donkey's.
You have both donkeys, but of course my son's a
stop Bucks. Right, yeah, both are Okay, Well I'm a Donkey's.
But every time you walk into Donkeys, you spend how
much coffee is like five dollars? Okay, So don't have
a cup of coffee three days a week and send
(32:18):
fifteen dollars, right or whatever. I don't know. There's always
a way to help, So go ahead.
Speaker 4 (32:23):
Late absolutely, So I obviously you know not everyone is
in a position to donate, but like you said, it's
a pop of coffee.
Speaker 3 (32:30):
Even five dollars helps.
Speaker 4 (32:32):
Also, we you know, we have a social media president,
so you know, if you like or share our our
social media post, because that really just helps spread awareness.
People are like, oh, okay, you know there's a there's
a foundation that I could really get on board with,
the Dion Foundation on Instagram.
Speaker 1 (32:49):
Okay, let's all do this together, folks. If you listen home,
you know we still have to you found it? Can
you find on my phone? You're very fast on this stuff.
That's why we have, by the way for technology absolutely.
So just you have your phone. I'm not I can't
(33:09):
see you from over he hold on, say you're in
the way. Okay, thank you. I just want to see
where phone is. Okay. So what you do is you
tag Sydney stumple Builder and then I can share the story.
Speaker 3 (33:21):
Sydney s y why stump Builder. I got it? Beare
five check follow?
Speaker 4 (33:32):
Okay, I will, I will share you, I will post.
I will post a story and share it and I'll
tag you in the you can repost so and then
obviously the d on www dot the d on fund
dot org, but that you can find.
Speaker 3 (33:46):
It on Instagram.
Speaker 1 (33:47):
Okay. What's so? We just you know, what's the mission
for this year? Like how much money you guys are
going to raise?
Speaker 3 (33:54):
So we didn't really touch on it, but we have.
Speaker 4 (33:59):
We have committed into working with a French company that
is developing in gene therapy treatment.
Speaker 3 (34:05):
It would be the first of its kind for our
children's form musculidystrophe. We have committed to one point two
million dollars to.
Speaker 4 (34:16):
Fund their deployment of their clinical trial in the United
States so it would be available for the United States patients,
which would be the first ever ever for this illness.
So we this over the past two years.
Speaker 3 (34:31):
We are incredibly close to our goal of one point
two million dollars since our since our founding, and then
obviously that's just step one. You know, we want to
help advance this clinical trial to further more patients. We
want to.
Speaker 4 (34:50):
Support this company because they're the only ones working on this,
and we really want to kind of change the future
for this these forms of muscula district and then also
other forms of muscular district who are sitting and waiting
for cures too.
Speaker 3 (35:03):
So you know, this is really just the beginning for us.
Speaker 1 (35:07):
How far they've come with MS in the last fifty years.
Speaker 3 (35:13):
Yeah, so huge question since the was it Johnny person
or who.
Speaker 1 (35:16):
Is it Jerry Lewis?
Speaker 3 (35:18):
Since the telethon Jerry Lewis?
Speaker 4 (35:20):
Since the telethon, now the MDA has supported research. Now
as of last year, there is a FDA approved gene
therapy treatment for children with duche muscular districte. So, like
I mentioned earlier, that's the number one most common gene
(35:42):
that causes muscular districute. So there is a game therapy
approvement that which, you know, while the rest of us
are sitting and waiting here all these other thirty four
sub types of muscular districty. It's a huge leap, like
you know, small step for man, big leap for mankind
type thing. A huge step that there is a therapy
available for this first ever. So that kind of sets
(36:06):
the landscape for you know, now the soldier rare types
to really try to you know, get a treatment and
developed as well.
Speaker 1 (36:16):
They have a client that's been main main head resource.
Uh we not rear, thank you guy all over the
world is one of my clients. I don't know if
you've ever heard of him. Have you ever heard of VJ? No,
it's a meeting that maybe I'd like to set up
(36:37):
for you guys.
Speaker 3 (36:38):
Yeah, that would be amazing.
Speaker 1 (36:40):
So VJ is a Brighams guy, but he's always traveling
all over the world, you know, teaching.
Speaker 3 (36:48):
Wow.
Speaker 1 (36:48):
But again scientists then.
Speaker 2 (36:52):
HM neologist is not that I can pronounce that immunology.
Speaker 3 (36:57):
He's an immunologist yes.
Speaker 4 (36:58):
I mean that's why that's something that's so important for
gene therapy because you use you actually use a virus
to get the healthy gene into your body. So it's
all about immunity. It's all about your immunity. So that
would be a great action. Actually, Okay, And that's kind
of you know, Cindy, that's kind of something that we've
done since since our diagnoses two and a half years ago.
Speaker 3 (37:18):
We anyone who says, okay, I go give me the number.
We called, were banging down doors, type can you help us?
Like we are calling.
Speaker 4 (37:26):
We've been calling in favors. People give us a number.
We called them, We set up meetings, We like, how
can we help them?
Speaker 1 (37:31):
You might feel lucky day because I'm in the middle
of another build out for him and for the family,
Like this is the third house, Okay, third perfect, this
is for the daughter. But let's talk about ms Honors Wikipedia.
Speaker 3 (37:45):
So he's the.
Speaker 2 (37:47):
Director of Evergrand Center for Immuniologic Diseases at Harvard Medical
School and bring a women's hospital, and then he's known
for neuroscience and cancer like autoimmunity, immune therapy. He's best
known for discovery the goat, the coat inhibitor molecule t
I M DASH three and the TIM family of genes
in the subset of immune cells called th H seventeen cells.
(38:11):
I don't know what any of that means.
Speaker 1 (38:12):
Okay, she has read a bunch of stuff. I don't
even know what we can talk about.
Speaker 3 (38:15):
Two, don't worry.
Speaker 1 (38:19):
So she'll share that link, you know, with your phone.
But then you let me know if you and I'll
set a meeting between you guys.
Speaker 3 (38:27):
You know so perfect.
Speaker 1 (38:29):
So what we have that coming up right now for
what's your next event? That if people want to jump
on and your pockets and give money, I'm telling people,
go in your pockets and give money stuff being cheap.
Go ahead.
Speaker 4 (38:46):
Yeah, they in the fall would be a muscle for
the muscle five k.
Speaker 3 (38:52):
But you know, we do have a marathon runners right
now if anyone.
Speaker 4 (38:56):
Is inclined to support them, and of course on the
same donations on the d on fund dot org.
Speaker 1 (39:02):
Okay, L D I O N. Well you'll say that
we come back, we're going to break. Okay, we got
to go to commercials. That's what pays for our show. Okay,
you're listening to city STAFFO and on toughest Nails on
w BZ. We'll be right back and welcome back to
Toughest Nails on WBZ. Courtney.
Speaker 2 (39:17):
How do people get in touch with you?
Speaker 1 (39:19):
Yeah, Courtney in Boston, stay with your boss. It's okay,
you can use your boss accent.
Speaker 3 (39:27):
Yeah. So you can check out our website www dot
d on fund dot org.
Speaker 1 (39:31):
Also try out again. People need to hear that www
dot d on.
Speaker 3 (39:37):
Fund dot org.
Speaker 4 (39:38):
All right, and then at the don Foundation on Instagram
and any any contribution counts.
Speaker 3 (39:47):
We are funding the first ever clinical.
Speaker 4 (39:48):
Trial for ultra reform lestidostrophe, and we're really just getting started.
Speaker 1 (39:54):
All right, Courtney. We welcome you come back a time
and we can talk about the same time. Loves having
you in the in the studio next night and we
will be making donations to the Stumpo Women. Okay, everybody,
have a great, safe weekend and we'll see you next week.
This is City Stumpo Top his Nails on WBZ News
Radio ten thirty
And welcome to Cindy Stumpo Tough his nails on WBZ
News Radio ten thirty And I'm here tonight with who.
Speaker 2 (00:07):
I have to pull this over? And Sam Samantha.
Speaker 1 (00:09):
Okay, why are we doing it that way today?
Speaker 3 (00:11):
There's no option?
Speaker 1 (00:13):
Okay, this is okay, this is what's going on here. Okay,
I'm gonna get I'm trying to get myself situated. We
had nice face care. Okay, we're back.
Speaker 3 (00:21):
Are you guys from mother daughter?
Speaker 1 (00:23):
Yes, yes, she's the mother daughter. I switched the roles. Okay,
I'm going to now put all the pressure on her. Okay.
Who's in the studio tonight.
Speaker 3 (00:32):
Sure. My name is Courtney Dion. I'm from Boston, mass.
Speaker 4 (00:36):
And I am the co founder, along with my husband,
of the Dean Foundation for Children with the Rare Diseases.
We are a nonprofit focused on raising funds and awareness
for pediatric ultra rare diseases. After the diagnosis of two
of our children with an ultrawar form of muscular distripty.
Speaker 1 (00:56):
So two children and they don't it's a genetic or
it just happens, or it is.
Speaker 4 (01:03):
So we have three kids and no family history of
this at all. But it is what they call an
autosomal recessive gene, so meaning I can carry it in
mind family for years, and my husband carried in his
family for years, and we just.
Speaker 3 (01:16):
Found the wrong person, you know.
Speaker 4 (01:17):
And each one of our children had a one and
four chance of inheriting this disease.
Speaker 3 (01:22):
So two of our three kids have it.
Speaker 1 (01:25):
And they said, you after the first one, obviously explain
that to me. So the first one you have.
Speaker 3 (01:29):
So I'll kind of go through the diagnosis.
Speaker 4 (01:32):
But it's a childhood onset, so it's not like something
that they screen at birth.
Speaker 3 (01:36):
It's not that's something that they see on ultrasounds.
Speaker 4 (01:39):
It's not something that he shows up enough blood tests
unless you're looking for it.
Speaker 3 (01:43):
And it's so ultra rare that it's not on like
the newborn screening panel or anything like that. So my
son was.
Speaker 4 (01:49):
Diagnosed in the summer, at the end of the summer
in twenty twenty two, and you know, after some of
some changes in his strength and his ability.
Speaker 3 (01:59):
I thing was wrong with him.
Speaker 4 (02:02):
I have a background, I as a registered there, so
I kind of just remembered like, oh, you know, some
of these childhood onset diseases happened when you're like six
or seven, not at birth, you know. So we got
him tested and it turned out that he had this
ultrawear form of muscular dystrophe. And through my research, you know,
once we learned that it actually could affect males and
(02:25):
females unlike some other forms of muscular dystrophe. My husband
and I kind of are kind of saw a little
bit of the symptoms that the early symptoms that we
had missed with him in my daughter who was six
at the time, So we got her tested as well,
and she had the same.
Speaker 1 (02:43):
So when she was born, you wouldn't have genetically tested
her for this.
Speaker 3 (02:47):
We didn't know.
Speaker 4 (02:48):
Yeah, we could have, we could have, but we wouldn't
have known. We didn't know until.
Speaker 1 (02:51):
My son was nine, Okay, got it all.
Speaker 3 (02:54):
Right, until the symptoms started showing up.
Speaker 1 (02:56):
See that's why I say we should do genetic testing
with each other before we marry and have children and
bring children.
Speaker 3 (03:01):
This way, I know, it's like if we knew this,
you know, we did.
Speaker 4 (03:05):
That's that's the scary part is like, really, with these
genetic diseases, you know, people these live in your family
lineage for years and years and years unknown.
Speaker 1 (03:15):
So not your your husband, not your mom and dad,
not his mom and dad.
Speaker 3 (03:21):
No, no family history of this.
Speaker 2 (03:24):
Really, what were the early signs that you were seeing?
Speaker 4 (03:27):
No?
Speaker 1 (03:28):
But I want to how you know it's a genetic
if you where do you trace it back to?
Speaker 4 (03:32):
More importantly, so, we haven't done like a twenty three
of me or anything like that on our ancestors.
Speaker 1 (03:39):
Do you know you could? Do you know anything about
your great grandparents?
Speaker 3 (03:44):
Like?
Speaker 4 (03:44):
Yeah, and that's the hard thing too, Like we're all
of this age where like your great grandparents, great great
grandparents are immigrants, you know, so like the family history
is not like one hundred percent you know, documented, It's
like who knows, someone may maybe way back.
Speaker 3 (03:57):
In Ireland had this disease and they.
Speaker 1 (04:00):
Just see you. That's what We're kind of lucky because
I've known up to my great great grandparents. On one side,
I had my great great grandparents. Sammy goes as far
up as her believe or not, till she was six
or seven. Her great great grandfather too, which would have
(04:20):
been papa's father. Do you understand my father, Yes, you're
a papa. And then his father's alive, Yeah, that would
be your great grandfather.
Speaker 2 (04:30):
I don't remember him.
Speaker 1 (04:30):
Though, right, Papa Frank. But my kids were born and
I was born and my ex husband was born with
we all, what's the chances we all have this?
Speaker 2 (04:38):
Well, your side but not Dad's.
Speaker 1 (04:40):
Your father has a too.
Speaker 2 (04:42):
Yeah, but I'm saying I don't know Dad's great.
Speaker 1 (04:44):
Boring past that conversation. So we are they're born with
what I'm born with, and what Joe's born with is
what's it called lip protein? Lipoprotein A, Like, what's the
chances that I knew when I married him he was
going to have it and I was going to have it?
And now both of our kids have it, right, So
they're cholesterol exactly, So.
Speaker 3 (05:04):
That's the same, same idea.
Speaker 1 (05:06):
But it was kind of funny because when she was
like I'd say eight or nine or ten around there,
twelve high school. High school is when I had high cholestero.
She had highcholesterol, Like why she had high cholesterol? Never
had it again? It balanced, but she went through a
period no medication, but that was probably from her having
but they never checked for it. It's just crazy how
(05:28):
you find out so much now about.
Speaker 2 (05:29):
You never had a heart attack, He probably wouldn't have
checked for whatever.
Speaker 1 (05:32):
You have never checked, but he had a he had
a widows that lived through it. But anyways, we'll go
back genetics. Just if we knew, yeah, if we.
Speaker 3 (05:41):
Knew what we knew, If we knew, I know we didn't.
Speaker 1 (05:45):
So he's got to roll it out. Okay, So we
what tell me what you have been doing since both
your children came down. You have this foundation. I want
my listeners to hear. You could have just been a
yeah mom and said, okay, well we have two kids
with MS and we're going to live our lives and
everybody's gonna.
Speaker 4 (06:10):
So you know, after the diagnoses of two of our kids,
we went through the we went through the stages of
grief absolutely, like denialing, the bargaining, depression, acceptance, over and
over again, and we kind of through our research. You know,
there is some science. There's some research for a treatment.
(06:31):
The treatment for something like this would actually be a
gene therapy treatment where they go and replace them the
mutated gene with the healthy gene.
Speaker 3 (06:40):
So there is some science.
Speaker 4 (06:42):
Luckily, the science has come so far in twenty years
whereas if this was twenty years ago that it would
be like literally nothing on the internet. You couldn't even
google it.
Speaker 3 (06:51):
So right when that happened, we kind of we dove in.
We we you know.
Speaker 4 (06:56):
We kind of harnessed our grief and we were like, no,
we need to do something about this. We can't just
sit and wait and let someone else try to figure
this out, you know, if they were going to do
what they would have done already. So we really we
really kind of rallied our community. Our community was all
help asking how can we help?
Speaker 3 (07:13):
How can we help? So we're like, you know what,
let's do something about this.
Speaker 4 (07:17):
So that's when we decided, you know, three or four
months after their diagnoses, that we were going to form
a foundation. We were going to start raising some money,
we were going to start raising awareness, and we were
going to try to really.
Speaker 3 (07:28):
Make a change.
Speaker 1 (07:29):
How weird is this MS that they have?
Speaker 3 (07:33):
So it must do a districtee. It's ultra rare.
Speaker 4 (07:36):
So it's like less than five hundred in the United States,
which is considered an ultraware disease.
Speaker 3 (07:43):
The numbers worldwide, don't cut off.
Speaker 1 (07:46):
What's that, I'm sorry say?
Speaker 4 (07:48):
The numbers worldwide are the same too, like ultraware at
all continents.
Speaker 1 (07:53):
You know, when you think about MS, one name comes
to mind, right, Labor Day weekend, Lewis, Yes, and we
grew up at that. I grew up with that on TV,
like we all grew up with that watching that two
three days of raising money and yep, and who took.
Speaker 3 (08:11):
His was so I don't think they do it. They
don't do a telethon anymore.
Speaker 4 (08:16):
But that was the original fundraising for the Muscular Dystrophe Association.
And they, you know, they have made They've really changed
the landscape in this whole area, like supporting research, finding
finding treatments for it. The thing about muscular dystrophe is
that there are over like forty some types. Our type
(08:41):
is a rare form called limb gird or muscular dystrophe.
So it's not the main one that like most or
the more. It's not the most common one, the second
most common one.
Speaker 1 (08:53):
Do me a favorite. Just hold that, thoughtful woman. We
just got to go off to break I'm sitting stump
when he listens to Tough as Nails on WB's you
will be right back and welcome back to the Toughest Nails.
I'm Cindy STUMPO. When you're in the studio tonight with who,
Samantha and Courtney. Okay, Courtney, pick up where we left off.
Go ahead, I'll stopped you.
Speaker 4 (09:15):
Well, you know, the science has come so far in
the past twenty years, Like it really is remarkable.
Speaker 3 (09:20):
They're able to with gene therapy.
Speaker 4 (09:22):
They're able to, you know, give you a healthy gene
and it goes in to where it needs to go
in the body and replace it.
Speaker 3 (09:32):
So the good that's the good news that you know,
it's twenty twenty five.
Speaker 1 (09:36):
Is that helping Is that helping children? I'm sorry, is
that helping your children right now?
Speaker 3 (09:44):
So it will in the future, it's not there's not
one right now. Well, we need it now exactly. So
that's where we don't have time.
Speaker 4 (09:53):
Why we founded exactly So that is why we founded
the Dean Foundation for Children with Great Diseases because seriously,
this is an unders served community, diere unmet needs. Do
these kids there are children, it's a pediatric disease. So
these children are just sitting there waiting for a care.
Speaker 3 (10:08):
So that's why we really just dove in.
Speaker 4 (10:10):
We're like, you know what, the time is going to
pass anyway, We're going to do something about it.
Speaker 1 (10:15):
Courtney, Can I ask you a personal question? Yes, did
this bring you and your husband close together or pull
you apart at the beginning and then bring you back together.
Like how does a husband not just one but two children?
Speaker 4 (10:30):
I know, I know, it's like that's the thing. It's
me and my husband kind of you know, it's tough.
We're both under monumental stress. But at the end of
the day, only he knows what I'm going through and
vice for ourself. Only I know what he's going through.
And I'm incredibly close with my family. I'm incredibly close
with my sisters. He's incredibly close with his family, But like,
(10:52):
at the end of the day, only he and.
Speaker 3 (10:53):
I know what this pain feels like.
Speaker 4 (10:57):
So while I never wanted to go into business with
him or work with him in any capacity at all,
you know, husband and wife.
Speaker 3 (11:03):
That's a I don't want to work with you.
Speaker 4 (11:06):
Working together on the foundation is definitely a little bit
of a challenge.
Speaker 3 (11:09):
Because it's like, Okay, you do this, I do that.
But at the end of the day, he.
Speaker 4 (11:14):
And I were in this together and only us, only
he and I are going to fight for those kids.
Speaker 3 (11:21):
You know, we can't, we will will. Both of us
would give our lives for them.
Speaker 4 (11:27):
So having that bond has definitely brought us closer together
in the past two years.
Speaker 1 (11:31):
And then you have a third child that's very healthy.
Speaker 4 (11:35):
Yes, he's a good middle So my oldest, Yes, my
oldest is.
Speaker 3 (11:42):
A boy, and my youngest is a girl. And my
son Luke in the middle is healthy.
Speaker 1 (11:47):
And Luke what does he think about everything that's going
on with the older and the younger? Does he? How
old is Luke?
Speaker 3 (11:53):
Luke is ten right now. He's he's such a good boy.
You know, he's such a good helper.
Speaker 4 (12:00):
He helps my son all the time, like always look
it up for him, like, will help pick him up
if he needs to.
Speaker 3 (12:06):
And he's such a trooper. Like the past two years,
we've been traveling NonStop.
Speaker 4 (12:09):
We've been traveling all over the country for medical means,
traveling for conferences, Like we've had to totally change our
whole lives.
Speaker 3 (12:18):
And he is just.
Speaker 4 (12:20):
He's adapted so well, he's coping so well. He's just
such a good boy. And I know this is going
to be hard for him. Have you know, poor middle
child already he's already a middle child.
Speaker 1 (12:31):
Yeah, but he's the many that's going to pick up
a lot of responsibility without even knowing he's doing it.
Speaker 3 (12:38):
You know.
Speaker 1 (12:39):
So he gets to probably that age, the teenage years,
where he goes, Okay, I'm all with my friends. Okay,
this is like, you know, I'm going to have fun.
But I guess, you know, he sees that he's only
known this life right because his oldest sibling had it
than he is younger. Does he have to ask you, you, mommy,
how come I didn't get this at a young age
or anything? Or no?
Speaker 4 (12:59):
Yeah, so so definitely all three of them have asked
why you know, why?
Speaker 3 (13:03):
Why me? And why not live? The kids have asked that,
and Lucas asked, why didn't I get it?
Speaker 4 (13:08):
So right away we kind of had to be like
very transparent with them. You know, they're kids. They need
to know what's going on.
Speaker 3 (13:14):
If you don't explain things, they're going to be anxious
and worrying and stuff. And of course the severity of
this illness is.
Speaker 4 (13:21):
Incredibly scary to chair share with children, but so we
share like what they development developmentally can can handle at
the time. But we try to be very transparent with them.
Speaker 1 (13:32):
Now, how do you get the two around their wheelchairs?
Their wheel chairs?
Speaker 3 (13:36):
Not yet, not yet, they're still walking, which is amazing.
My son's twelve. He's doing really well. It is progressive.
Speaker 4 (13:46):
So from the onset of like when you kind of
notice those first couple symptoms, it gets worse and worse
and worse because it's basically you're born with healthy muscle
and then the muscles when they are under stress, they
just get damaged. So every day is just more muscle
damage and your body can't repair it. So basically it's
just progressive. It's a progressive illness as the years belong.
Speaker 1 (14:07):
But what they don't know where they don't know much
about it. How can they determine, say, well, by fourteen
they'll be at this age and by fifty, well it's
so weird.
Speaker 3 (14:18):
It is rare, but there it is.
Speaker 4 (14:21):
You know, there are patients with it, so they have
they kind of have like a what they call a
phenotype kind of mapped out and it's it's pretty similar
to tudish and muscular dystrophe, which is like the one
that the more common one that.
Speaker 3 (14:34):
Most boys have. So they kind of matter up.
Speaker 4 (14:37):
But it is hard to study because this does have
a lot of variability to it. So some kids might
you know, lose their ability to walk at thirteen.
Speaker 3 (14:46):
Some kids might walk till twenty.
Speaker 1 (14:48):
It's hard to just don't know.
Speaker 3 (14:52):
Yeah, it's hard to tell.
Speaker 2 (14:54):
So are the signs different than boys versus girls question?
Speaker 3 (15:01):
Yeah, a little bit. I would say.
Speaker 4 (15:03):
My daughter's biggest symptom that we knew we had to
test her with was she was toe walker. And you know,
she's done valations she was like two, so that's always
been like her. She's very dainty and box on her toes.
Speaker 3 (15:16):
And a lot of kids walk on the toes too,
it's not like that uncommon, so with.
Speaker 1 (15:22):
You quit everything.
Speaker 3 (15:26):
Those toes.
Speaker 4 (15:27):
So I probably wouldn't have checked her if she was
my first you know, I wouldn't have checked her if
her just that. But my son at around like nine,
So what problemted me to test him was around nine
years old.
Speaker 3 (15:40):
Like we were out.
Speaker 4 (15:43):
All summer together and it was like, you know, they
go to school every day. You don't see exactly what
physical activities they do all day at school, but then
you know, spending every minute with him last summer, I
was like, something is off, Like he can't climb up
a ladder, Like he's having trouble climbing up a ladder
out of a pool, having trouble climbing up onto a
boat like things like that, and I'm like, something definitely
(16:07):
shifted and I just kind of have a gut feeling
that's something was wrong.
Speaker 1 (16:13):
If you don't mind me asking Queney, what did Joe
do pryor like, he spends a lot of time on
this organization. And when you guys married and whatever before
had children. What was his job his full time job
or is it still his full time job?
Speaker 3 (16:26):
It still is his full time job. So he is
a fourth generation.
Speaker 4 (16:31):
Wine and liquor retailler, So his family business has been
a They have five package stores in the Metro West
area of Boston, So he's still he's still runs clothes.
He's he's very busy with that, of course, and he
stays active with that.
Speaker 1 (16:51):
And the kids they go to school. They're not homeschools
to go to school, but you're traveling a lot for
different what doctor's here exactly?
Speaker 3 (17:01):
Yeah, doctors care?
Speaker 4 (17:02):
And then just foundation work too, like there's a lot
of advocacy work that needs to be done.
Speaker 1 (17:10):
Is the company, Quinny, how hard is it to raise
money for this?
Speaker 4 (17:15):
It's really I don't know if you've ever fundraised or.
Speaker 1 (17:19):
Anything, many many, many and too thirty something years of
my life. Yes, and the thing you hate most is
asking people for money, right, It's like, uh.
Speaker 3 (17:31):
I know, and you know, we're so lucky.
Speaker 4 (17:33):
Our community has really rallied like right off, right out
the gate. Our community was so you know, jumped right
on board to help.
Speaker 1 (17:40):
We had when you read your community event, when you
say community, which community, what part of Austin so our
local community.
Speaker 3 (17:49):
I'm from Boston.
Speaker 4 (17:50):
I'm from the city, and my husband's from Newton, So
and then we live on the South Shore now. So
just between the two families, we both have big families.
I think between the two family is we we know
a lot of people.
Speaker 3 (18:01):
I guess I don't know.
Speaker 1 (18:04):
Boston thing, Newton Cohasset, Boston, Newton Co has it at
least for a reason that you can raise money, right,
But it gets to a point where you kind of
start going, oh God, can I call that person again?
Can I call this person again?
Speaker 3 (18:18):
Exactly?
Speaker 1 (18:19):
It's not like you're asking for you You're asking for the
spun that you have. You have enough money for your
own children. It's not what it's about. It's about helping
people that don't have the money to get the resources
they need for their children. Right, So it's trust me.
Speaker 3 (18:37):
I know, it's not like that's what That's what I
try to say too.
Speaker 4 (18:39):
I'm like, it's not a good com me at all,
you know, it's we want to make a change in
this landscape. We want to make a change for this community.
This community's been sitting here waiting for a treatment.
Speaker 1 (18:49):
Okay, hold that thought. We're going right out to break.
I'm sending stumbointing you listen to the Toughest Nails on
WBZ and we'll be right back. And welcome back to
Toughest Nails on WBZ News Radio ten thirty. And I'm
Sindy and I'm here with my daughter.
Speaker 2 (19:01):
Do you have a name Samantha?
Speaker 1 (19:04):
For some reason, we are sharing one mite tonight, okay,
because we have a full studio, so you and I
gotta share. Mike, that's the worst. Usually Samantha's over the year,
like way across from me, which is really good.
Speaker 4 (19:15):
Right now.
Speaker 1 (19:17):
They're great. They're great. I can't think you're going on
all right, but they can they take the glee away something.
Speaker 2 (19:24):
Yes, I know they're great though.
Speaker 1 (19:27):
I like them. They have a glear and I can
see the mean. I put my contact lenses, I can't
see right, but I can see far away. I take
them off now and I can see close still right.
Welcome to getting older. That's such a wonderful thing. Here's
my question. I'm sure you've met many children, right obviously,
and I and because of the hippo law, I'm not
(19:48):
asking you to discuss that. My question to you is,
have your children got to meet other kids that have
exactly their disease they have?
Speaker 4 (19:58):
Yeah, and that has been so impactful. You know, you
see these kids going through the same thing that your
children are going through.
Speaker 3 (20:04):
And for my children to see that they're.
Speaker 4 (20:06):
Not alone has been so impactful. And that's kind of
something that really drives me and Joe. You know, this
is so much more than just our kids. These are
other kids who are you know, out there waiting for
something to happen, waiting for a cure. And they may,
you know, their families didn't choose to go be you know,
(20:26):
do a nonprofit. They some of these families conquered down
and just.
Speaker 3 (20:30):
Kind of settled and.
Speaker 4 (20:33):
Not nothing wrong with that at all, but like, you know,
just different approaches. So that's what it really drives us
at the end of the day, is like we need
to be a voice.
Speaker 3 (20:42):
For children more all these beautiful children that we've met.
Speaker 1 (20:47):
Okay, so do any of these other parents help you
guys that have these that their children have these diseases. Well,
you guys doing all the heath lifting, so I mean.
Speaker 3 (20:56):
The heavy lifting is definitely us.
Speaker 4 (20:58):
But the some of the parents have found ways to
kind of help contribute, you know, with their local communities,
kind of contribute to the Deom Foundation. And then there
are other families that there's a family that has.
Speaker 3 (21:14):
Foundation as well too.
Speaker 4 (21:15):
So they kind of did a lot of work ten
years ago. So they've been a huge kind of leader
for us. You know, we've kind of learned and leveraged
what had worked for them and kind of gone off
their advice and stuff. And they've given us such amazing
advice for our kids too. So kind of things that
we can kind of share along our community when we
(21:38):
meet new patients. Patients are reaching out via our social
media channels every day.
Speaker 1 (21:43):
Now, okay, now, truth and honesty. How many times have
you like just want to run your head through a wall,
go why us? And why why? Yes? And why does
this happen to us? And have that feel bad moment
and then take yourself out and bring yourself back to reality.
How many times have you had a dot?
Speaker 2 (21:59):
Right?
Speaker 3 (22:00):
I mean, of course, I think deep down daily, right, Like?
Speaker 1 (22:03):
But cool, glad, I'm sorry.
Speaker 3 (22:06):
I yeah, I think deep down daily. I have that.
But also I have I have a lot of faith.
You know.
Speaker 4 (22:11):
I think that there is a bigger plan for everything,
and I feel like I was given these children for
a reason. I think that I was also given the
tools to kind of go and bang down some doors
and find a way to make a change. You know,
me and my husband were both very relentless. We're both
very stubborn, which in this sense has really kind of
(22:32):
we kind of use that as a strength. I would say,
you know, we don't take no for an answer, and
that's something that we really.
Speaker 3 (22:39):
Want to drive.
Speaker 1 (22:39):
I hate to tell you, but that's a Boston thing. Okay.
We don't like the word now. We hate the word tomorrow.
Speaker 4 (22:45):
Right.
Speaker 1 (22:45):
So if you're your Tanasi's there and your grass, I
don't like the word tomorrow business. No, No, we're gonna get
done today right tomorrow night exactly. So as long as
you keep you're just like an excavator. I call you
an excavator. You just keep going through walls. You don't care.
You're just going to keep going through and keep going.
Speaker 3 (23:02):
And you know who's gonna fight for your kids?
Speaker 1 (23:05):
Like Noah, No, only the mother and father. That's it.
You can be married, he could be married to somebody else,
but no one's gonna love your kids the way you
love your kids. And that's really the truth. Whether you know,
we can love other people's kids, but just is your kids, right,
So yeah, who said being a mom was easy? Never
(23:26):
made nobody right, No, nobody. That's the truth. But it's
it's nice to see that you and Joe came together instead, okay,
because a lot of times I've seen the stuff your
pot families and I've seen them bring them together. Right,
It's like, but yeah, you guys have to go out
and just have fun, you and Joe.
Speaker 4 (23:48):
I mean, yeah, well we do have to go separate
from the kids for like some some foundation work, so
we use that time to like, really, it's really nice
just by ourselves.
Speaker 3 (23:59):
We had the chance to talk because at home we
give our attention to the kids. Of course, we have
three kids, two dogs, a cat. Like it's a little crazy,
so we use that.
Speaker 1 (24:08):
We have dogs and cats. There too, Yeah, throw it
in the mix. Okay, how much more stress do you want?
Hold on? We have the pedatrician, were the uh vets
and cats flying around the house. Yeah, sounds like a
lot of anxiety to me. I'd rather go to work.
Speaker 3 (24:26):
With.
Speaker 1 (24:27):
So it helps when you come from a big family,
that it does. I'm just sitting here watching you. You're beautiful,
absolutely absolutely stunning, beautiful.
Speaker 2 (24:38):
You really and yeah she smiles.
Speaker 1 (24:41):
She does smile, which like when she when she you
do light up when you smile. But you also see
the pain behind those eyes. But that's me. I can
see both. I see the glassy eyes and I see
the pain behind the eyes, right, which I don't know
a mother that wouldn't feel that way. But right, how
hard is it? I was going to wait till after
(25:03):
our next break, but we can go into this a bit.
How hard you find Well, let me let me take
that back. What are you doing for your fundraises? Because
it's like you got to spend money to make money, right,
and people want to come to Gallas and whatever, and
it's so ridiculous. Just give them money. Like now you're
going to go out and buy address you can get
your makeup done, and he had done, and you could
(25:25):
have donated that money. That's how I see exactly.
Speaker 3 (25:28):
But so that's kind of our approach.
Speaker 4 (25:30):
We have a great team on the foundation and my
husband coming from a business background, he that's his model.
Speaker 3 (25:36):
You got to spend money to make money. So he's
good with that.
Speaker 4 (25:38):
He's really good with like that kind of coaching us
on that kind of aspect. You know, certain things you're
going to have to spend a little money to make money.
Speaker 3 (25:45):
We we do.
Speaker 4 (25:47):
We've had we've had a few really successful events.
Speaker 3 (25:50):
Like what we have a local five k that has we've.
Speaker 4 (25:57):
Run two years now in a row and it's been
you know, four hundre people showed up.
Speaker 3 (26:01):
It's been amazing. It's been a huge turnout. That what
is that because like a walk.
Speaker 4 (26:07):
Run that was great because it really catered to families
and like families could come show up, kids could come
show up, So it was.
Speaker 3 (26:14):
Great to have kids there.
Speaker 4 (26:15):
This important children with disabilities, you know, and it's really
great because it kind of extends back like inclusivity. Kids
are kids are so understanding when they kind of know
what's going on, so they're like, hey, you know, I
know someone who walks a little funny like I'll come
support them great. So that was a really great way
to number one, raise awareness and of course fun raise.
We also had two years in a row, two really
(26:38):
successful golf tournaments, which you know, caters to like more
of the guys side.
Speaker 3 (26:42):
So we're kind of just trying to hit different crowds if.
Speaker 4 (26:44):
You can kind of catch where we're going with at
I do want one once for families. One's more for
you know, the guys who want to come help. We
have a ton of industry partners, We have a ton
of you know, Joe knows a lot of successful businessmen.
Speaker 3 (26:57):
So like that's where they want to come and have fun.
They want to come have fun, they want to come.
Speaker 1 (27:02):
Want like golf, right, so tell them they can golf
and drink. And I just bought it. I can't tell
me how many rounds I have to buy. Just a
nearly foundation, another fifth big foundation that you know in Boston, Cindy.
We need six thousand dollars. I never played a game
of golf my life. Okay, I've never been chased the god.
One time. I think I was throwing the golf both
my end. Okay, yeah, I had six thousand dollars, No problem,
(27:24):
We'll take a foursome, right, So you're right, that's where
men most men love to hang and they go have
their drinks, they've smoke their cigars and they get generous
and then all of a sudden, the pa comes out
and everybody's bidding this and bidding up and yeah, yes.
Speaker 3 (27:40):
Yeah, And then I just just last month we had
it Austin. It was so fun. We had it. It
was like full found amazing.
Speaker 4 (27:46):
We had a casino cruise on the Spirit of Boston
in Boston Harbor. So we had like a casino company
come in so people came on the boat, their tippet
got down like all their chips and stuff like that,
so really big had to buy the ticket to come on.
Speaker 3 (28:02):
And we had like cocktail attires. So it was super fun.
Speaker 4 (28:04):
There was We had like two sixty people come and
it was awesome. We packed the boat really and it
was a huge, amazing turnout, so much fun.
Speaker 3 (28:15):
So I think that that will be like definitely an
inaugural I mean a yearly thing for.
Speaker 4 (28:19):
Us, because people just had a last and everyone's like
next year more time.
Speaker 3 (28:23):
We need more time also too. For the past two
years we have done a Boston ad On team.
Speaker 4 (28:29):
So luckily we are, like I mentioned, we're from the
city of Boston. So luckily we've been able to secure
some vibs and have some runners kind of representing. You know,
in our motto is run for those who can't, because
my daughter says, like, one day I want to run
the marathon, and you know, that's a dream, that's something
that these kids, that's something.
Speaker 3 (28:51):
That they can have some day if we can make
a change.
Speaker 1 (28:55):
You know, gay, let's hold that thought from it. We're
going out to break. I'm Cindy Stumpo and you listen
to Toughest Nails on WVZ and I'm with Sammy and
I'm with Courtney. Will be right back and welcome back
to Toughest Nails. And I'm Cindy Stumpo and I'm here
with Samantha and I'm here with Courtney. And of course
the best conversations always happened. We would go to commercial
and I asked Courtney what she was, and of course
(29:16):
she says, she's a cancer, right, and I'm a cancer.
So as we're looking at each other, I can see
the pain and the happiness in a rise, right, I'm
like because cancer people just I hate that, Like I said,
I hate that would impact but we just feel we
feel it. What are you kids?
Speaker 3 (29:31):
What are there?
Speaker 4 (29:33):
My son's a Libra, which she said total Libra, and
he's like he's just like a dream boy, you know, they.
Speaker 1 (29:38):
Don't want to fight. Go ahead.
Speaker 4 (29:40):
That's my oldest. And then my second is.
Speaker 3 (29:46):
A Leo because a little child though too, so like
it kind of it's kind of funny. He's not like
a true true Leo.
Speaker 4 (29:53):
I would say he's more of a cancer, but he
is July twenty fourth, so I feel like he could
like he's more more cancer.
Speaker 1 (30:01):
So it's warman affection. Yeah, warm affection. But you you
know you you are a very warm person for sure,
and you'll do for the world. But men, when you
had enough, you had enough to there's a breaking point
for you too. But then we're over it in five
minutes and like it never even happened. Isn't that crazy?
Like you can blast off of five minutes and put
(30:23):
it right back in and you're over it and you're like,
let's go for dinner. But the other person's going you
want to go for dinner, like you just flipped out
and freak. Yeah, it's over. It's just nothing like your
box is worse than your bite cancer. Yeah, a threat,
I just threatened. What is your daughter?
Speaker 4 (30:42):
She's aces and oh my god, she is like I'll
just I'll trust today and so sweet, so kind, like
she the girl drama and she's nine too, so I'm like,
oh my god, girl very it starts, yeah, the girl drama.
That's so funny, like like honestly, I'm like, wow, Actually,
(31:03):
God knew what he was.
Speaker 3 (31:03):
Doing, given me only one because this has had like
that dollars ship.
Speaker 1 (31:08):
You should understand her more than anybody because you're auto sensive,
but she just takes to a whole other level without
the but you're out of sensive, but you get somewhat
of a backbone the just like, well, now.
Speaker 2 (31:20):
I know why her middle is the way he is.
Speaker 3 (31:21):
He's Leo.
Speaker 2 (31:23):
So he's very decisive compared to the other two.
Speaker 1 (31:26):
Is he very decisive? Yeah? Yeah, he's a sign fire.
Speaker 3 (31:34):
He takes fair business like he's just like you know.
Speaker 1 (31:37):
So tell us, how can my listeners help you? How
can the stumpos help you? Coney and lay it on thick? Okay,
because sometimes people are very cheap, right, they need to
dig in and I always say this, I don't care
if you give five dollars or you give a thousand dollars,
you have five hundred dollars, you give a dollar, I
(31:57):
don't care. It's it's a it's a cup of stuff, Bucks,
coffee or Donkeys. Right, I'm a donkey, she's a Donkey's.
You have both donkeys, but of course my son's a
stop Bucks. Right, yeah, both are Okay, Well I'm a Donkey's.
But every time you walk into Donkeys, you spend how
much coffee is like five dollars? Okay, So don't have
a cup of coffee three days a week and send
(32:18):
fifteen dollars, right or whatever. I don't know. There's always
a way to help, So go ahead.
Speaker 4 (32:23):
Late absolutely, So I obviously you know not everyone is
in a position to donate, but like you said, it's
a pop of coffee.
Speaker 3 (32:30):
Even five dollars helps.
Speaker 4 (32:32):
Also, we you know, we have a social media president,
so you know, if you like or share our our
social media post, because that really just helps spread awareness.
People are like, oh, okay, you know there's a there's
a foundation that I could really get on board with,
the Dion Foundation on Instagram.
Speaker 1 (32:49):
Okay, let's all do this together, folks. If you listen home,
you know we still have to you found it? Can
you find on my phone? You're very fast on this stuff.
That's why we have, by the way for technology absolutely.
So just you have your phone. I'm not I can't
(33:09):
see you from over he hold on, say you're in
the way. Okay, thank you. I just want to see
where phone is. Okay. So what you do is you
tag Sydney stumple Builder and then I can share the story.
Speaker 3 (33:21):
Sydney s y why stump Builder. I got it? Beare
five check follow?
Speaker 4 (33:32):
Okay, I will, I will share you, I will post.
I will post a story and share it and I'll
tag you in the you can repost so and then
obviously the d on www dot the d on fund
dot org, but that you can find.
Speaker 3 (33:46):
It on Instagram.
Speaker 1 (33:47):
Okay. What's so? We just you know, what's the mission
for this year? Like how much money you guys are
going to raise?
Speaker 3 (33:54):
So we didn't really touch on it, but we have.
Speaker 4 (33:59):
We have committed into working with a French company that
is developing in gene therapy treatment.
Speaker 3 (34:05):
It would be the first of its kind for our
children's form musculidystrophe. We have committed to one point two
million dollars to.
Speaker 4 (34:16):
Fund their deployment of their clinical trial in the United
States so it would be available for the United States patients,
which would be the first ever ever for this illness.
So we this over the past two years.
Speaker 3 (34:31):
We are incredibly close to our goal of one point
two million dollars since our since our founding, and then
obviously that's just step one. You know, we want to
help advance this clinical trial to further more patients. We
want to.
Speaker 4 (34:50):
Support this company because they're the only ones working on this,
and we really want to kind of change the future
for this these forms of muscula district and then also
other forms of muscular district who are sitting and waiting
for cures too.
Speaker 3 (35:03):
So you know, this is really just the beginning for us.
Speaker 1 (35:07):
How far they've come with MS in the last fifty years.
Speaker 3 (35:13):
Yeah, so huge question since the was it Johnny person
or who.
Speaker 1 (35:16):
Is it Jerry Lewis?
Speaker 3 (35:18):
Since the telethon Jerry Lewis?
Speaker 4 (35:20):
Since the telethon, now the MDA has supported research. Now
as of last year, there is a FDA approved gene
therapy treatment for children with duche muscular districte. So, like
I mentioned earlier, that's the number one most common gene
(35:42):
that causes muscular districute. So there is a game therapy
approvement that which, you know, while the rest of us
are sitting and waiting here all these other thirty four
sub types of muscular districty. It's a huge leap, like
you know, small step for man, big leap for mankind
type thing. A huge step that there is a therapy
available for this first ever. So that kind of sets
(36:06):
the landscape for you know, now the soldier rare types
to really try to you know, get a treatment and
developed as well.
Speaker 1 (36:16):
They have a client that's been main main head resource.
Uh we not rear, thank you guy all over the
world is one of my clients. I don't know if
you've ever heard of him. Have you ever heard of VJ? No,
it's a meeting that maybe I'd like to set up
(36:37):
for you guys.
Speaker 3 (36:38):
Yeah, that would be amazing.
Speaker 1 (36:40):
So VJ is a Brighams guy, but he's always traveling
all over the world, you know, teaching.
Speaker 3 (36:48):
Wow.
Speaker 1 (36:48):
But again scientists then.
Speaker 2 (36:52):
HM neologist is not that I can pronounce that immunology.
Speaker 3 (36:57):
He's an immunologist yes.
Speaker 4 (36:58):
I mean that's why that's something that's so important for
gene therapy because you use you actually use a virus
to get the healthy gene into your body. So it's
all about immunity. It's all about your immunity. So that
would be a great action. Actually, Okay, And that's kind
of you know, Cindy, that's kind of something that we've
done since since our diagnoses two and a half years ago.
Speaker 3 (37:18):
We anyone who says, okay, I go give me the number.
We called, were banging down doors, type can you help us?
Like we are calling.
Speaker 4 (37:26):
We've been calling in favors. People give us a number.
We called them, We set up meetings, We like, how
can we help them?
Speaker 1 (37:31):
You might feel lucky day because I'm in the middle
of another build out for him and for the family,
Like this is the third house, Okay, third perfect, this
is for the daughter. But let's talk about ms Honors Wikipedia.
Speaker 3 (37:45):
So he's the.
Speaker 2 (37:47):
Director of Evergrand Center for Immuniologic Diseases at Harvard Medical
School and bring a women's hospital, and then he's known
for neuroscience and cancer like autoimmunity, immune therapy. He's best
known for discovery the goat, the coat inhibitor molecule t
I M DASH three and the TIM family of genes
in the subset of immune cells called th H seventeen cells.
(38:11):
I don't know what any of that means.
Speaker 1 (38:12):
Okay, she has read a bunch of stuff. I don't
even know what we can talk about.
Speaker 3 (38:15):
Two, don't worry.
Speaker 1 (38:19):
So she'll share that link, you know, with your phone.
But then you let me know if you and I'll
set a meeting between you guys.
Speaker 3 (38:27):
You know so perfect.
Speaker 1 (38:29):
So what we have that coming up right now for
what's your next event? That if people want to jump
on and your pockets and give money, I'm telling people,
go in your pockets and give money stuff being cheap.
Go ahead.
Speaker 4 (38:46):
Yeah, they in the fall would be a muscle for
the muscle five k.
Speaker 3 (38:52):
But you know, we do have a marathon runners right
now if anyone.
Speaker 4 (38:56):
Is inclined to support them, and of course on the
same donations on the d on fund dot org.
Speaker 1 (39:02):
Okay, L D I O N. Well you'll say that
we come back, we're going to break. Okay, we got
to go to commercials. That's what pays for our show. Okay,
you're listening to city STAFFO and on toughest Nails on
w BZ. We'll be right back and welcome back to
Toughest Nails on WBZ. Courtney.
Speaker 2 (39:17):
How do people get in touch with you?
Speaker 1 (39:19):
Yeah, Courtney in Boston, stay with your boss. It's okay,
you can use your boss accent.
Speaker 3 (39:27):
Yeah. So you can check out our website www dot
d on fund dot org.
Speaker 1 (39:31):
Also try out again. People need to hear that www
dot d on.
Speaker 3 (39:37):
Fund dot org.
Speaker 4 (39:38):
All right, and then at the don Foundation on Instagram
and any any contribution counts.
Speaker 3 (39:47):
We are funding the first ever clinical.
Speaker 4 (39:48):
Trial for ultra reform lestidostrophe, and we're really just getting started.
Speaker 1 (39:54):
All right, Courtney. We welcome you come back a time
and we can talk about the same time. Loves having
you in the in the studio next night and we
will be making donations to the Stumpo Women. Okay, everybody,
have a great, safe weekend and we'll see you next week.
This is City Stumpo Top his Nails on WBZ News
Radio ten thirty
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