March 7, 2026 • 40 mins
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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 I.
Speaker 2 (00:07):
Have to pull this over?
Speaker 3 (00:08):
And Sam Samantha. Okay, why are we doing it that way?
Speaker 4 (00:11):
To me?
Speaker 5 (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.
Speaker 3 (00:20):
Okay, we're back, are you guys, mother daughter?
Speaker 1 (00:23):
Yes, yes, she's the mother daughter. I switched the roles. Okay,
I want to now put all the pressure on her.
Speaker 3 (00:31):
Okay. Who's in the studio tonight.
Speaker 5 (00:32):
Sure. My name is Courtney Dion.
Speaker 4 (00:35):
I'm from Boston, mass 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 all of our children with an
ultra rare form of muscular districty.
Speaker 1 (00:56):
So two children and they don't it's a genetic or
it just happens, or it is.
Speaker 5 (01:03):
So we have three kids and no family history of
this at all.
Speaker 4 (01:07):
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 found the wrong purse, and you know, and
each one of our children had a one and four
chance of inheriting this disease.
Speaker 5 (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.
Speaker 3 (01:28):
So the first one you.
Speaker 5 (01:29):
Have, 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. It's not that's something that
they see on ultrasounds. It's not something that shows up
enough blood tests unless you're looking for it. And it's
so ultra rare that it's not on like the newborn
screening panel or anything like that. So my son was
diagnosed in the summer, at the end of the summer
(01:52):
in twenty twenty two, and you know, after some changes
in his strength and his ability, I thing was wrong
with him. I have a background 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
(02:15):
got him tested and it turned out that he had
this ultrawear form of muscular dystrophy. And through my research,
you know, once we learned that it actually could affect
males and females unlike some other forms of muscular dystrophe.
Speaker 5 (02:29):
My husband and I kind of are kind of saw
a little bit of the.
Speaker 4 (02:33):
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 5 (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 3 (02:51):
My son was nine, Okay, got it all right.
Speaker 5 (02:54):
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 met and have children and
bring children this way.
Speaker 4 (03:02):
I know.
Speaker 5 (03:02):
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 3 (03:15):
So not your your husband not your mom and dad,
not his mom and dad.
Speaker 5 (03:21):
No, no family history of this.
Speaker 2 (03:24):
Really, what were the early signs that you were seeing?
Speaker 5 (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 3 (03:32):
More importantly, so.
Speaker 4 (03:34):
We haven't done like a twenty three of me or
anything like that on our ancestors.
Speaker 3 (03:39):
Do you know that you could? Do you know anything
about your great grandparents?
Speaker 4 (03:44):
Like? Yeah, and that's the hard thing too, Like we're
all at 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 5 (03:57):
In Ireland had this disease and they just see.
Speaker 1 (04:02):
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 it or not, till she was six or seven.
Her great great grandfather too, which would have been papa's father.
(04:23):
Do you understand my father, Yes, you're a papa. And
then his father's alive, Yeah, that would be your great grandfather.
Speaker 3 (04:30):
I don't remember him, though, right, Papa Frank.
Speaker 1 (04:31):
But my kids were born and I was born and
my husbin 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 3 (04:40):
Your father has a too, Yeah, but I'm.
Speaker 2 (04:42):
Saying I don't know Dad's great glad.
Speaker 3 (04:44):
Past that conversation.
Speaker 1 (04:46):
So we are they're born with what I'm born with,
and what Joe's born with is what's it called lip
a protein?
Speaker 3 (04:53):
Lipoprotein A?
Speaker 1 (04:54):
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.
Speaker 5 (05:04):
So 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 cholesterol.
She had highcholesterol, Like why ship 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 you
(05:28):
find out so much now about you.
Speaker 2 (05:30):
Never had a heart attack. He probably wouldn't have checked
for whatever.
Speaker 1 (05:32):
You would 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
knew what we knew, if we knew, I know, we didn't,
so he's got to roll it out. Okay, So we
what tell me what you have been doing since both
(05:53):
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 was gonna live our lives and
everybody's gonna you went down.
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.
Speaker 5 (06:26):
You know, there is some science. There's some research for
a treatment.
Speaker 4 (06:31):
The treatment for something like this would actually be a
gene therapy treatment where they go and replace them the mutated.
Speaker 5 (06:38):
Gene with the healthy gene. 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 would be
like literally nothing on the Internet. You couldn't even Google it.
So right when that happened, we kind of we dove in.
We we you know, 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
(07:03):
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 asking how can we help?
Speaker 5 (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.
Speaker 5 (07:22):
We were going to form a foundation.
Speaker 4 (07:24):
We were going to start raising some money, we were
going to start raising awareness, and we were going to try.
Speaker 5 (07:28):
To really make a change.
Speaker 3 (07:29):
How weird is this MS that they have?
Speaker 5 (07:33):
So it's must be a Districtye, 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 5 (07:43):
The numbers worldwide, don't cut off.
Speaker 3 (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.
Speaker 3 (07:59):
Lewis, Yes, and we grew up at that.
Speaker 1 (08:02):
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.
Speaker 5 (08:11):
Took 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 Didstripte 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 musculardystrophe is that
there are over like forty some types. Our type is
(08:41):
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 3 (08:53):
Do me a favorite show?
Speaker 1 (08:55):
Hold that thoughtful Woman? We just got to go off
to break I'm Sitty Snubb. When you listen to Tough
as Nails on WBZ, you will be right back and
welcome back to the Toughest Nails.
Speaker 3 (09:02):
I'm Cindy Stumpo. When you're in the studio tonight with.
Speaker 1 (09:04):
Who, Samantha and Courtney Okay, Courtney, pick up where we
left off. Go ahead, I'll stopped you.
Speaker 4 (09:15):
You know, the science has come so far in the
past twenty years, Like it really is remarkable. They're able
to with gene therapy, 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.
So the good that's the good news that you know,
it's twenty twenty five.
Speaker 1 (09:36):
Is that helping the time? Is that helping children? I'm sorry,
is that helping your children right now?
Speaker 5 (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, dire unmet needs. Do
these kids there are children, that's it's a pediatric disease.
So these children are just sitting there waiting for a care.
So that's why we really just dove in. We're like,
you know what, the time is going to pass anyway,
We're going to do.
Speaker 5 (10:13):
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.
Speaker 5 (10:42):
I'm going through and vice for ourself.
Speaker 4 (10:44):
Only I know what he's going through, and it's I'm
incredibly close with my family.
Speaker 5 (10:48):
I'm incredibly close with my sisters.
Speaker 4 (10:50):
He's incredibly close with his family, But like, at the
end of the day, only he and I know what
this pain feels like.
Speaker 5 (10:57):
So while I never.
Speaker 4 (10:59):
Wanted to go into business with him or work with
him in any capacity at all, you know, husband and wife.
Speaker 5 (11:03):
That's it. 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 5 (11:09):
Because it's like, Okay, you do this, I do that.
Speaker 4 (11:11):
But at the end of the day, he and I
were in this together and only us. Only he and
I are going.
Speaker 5 (11:20):
To want to fight for those kids. You know we can't,
we will will. Both of us would.
Speaker 4 (11:26):
Give our lives for them, So having that bond has
definitely brought us closer together in the past two years.
Speaker 3 (11:31):
And then you have a third child that's very healthy.
Speaker 5 (11:35):
Yes, he's a good middle So my oldest and my
oldest is.
Speaker 4 (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?
Speaker 3 (11:50):
Does he? How old is Luke?
Speaker 5 (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 looking
up for him, like will help pick him up if
he needs to.
Speaker 5 (12:06):
And he's such a trooper.
Speaker 4 (12:07):
Like the past two years we've been traveling NonStop, we've
been traveling all over the country for medical means, traveling
for conferences, like we've had to.
Speaker 5 (12:15):
Totally change our whole lives. And he is just.
Speaker 4 (12:20):
He's adapted so well. He's 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
Meddle child already he's already a middle child.
Speaker 1 (12:31):
So yeah, but he's the man that's going to pick
up a lot of responsibility without even knowing he's doing it,
you know. So he gets to probably that age, the
teenage years, where he goes, Okay, I'm all 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
(12:52):
than he is younger. Does he other ask you you, mommy,
how come I didn't get this at a young age
or anything?
Speaker 3 (12:57):
Or no?
Speaker 4 (12:59):
Yeah, so so definitely all three of them have asked
why you know, why?
Speaker 5 (13:03):
Why me? And why not live?
Speaker 4 (13:04):
The kids have asked that, and Lucas asked, why didn't
I get it? 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. If you don't
explain things, they're going to be anxious and worry and stuff.
And of course the severity of this illness is incredibly
scary to chair share with children, but so we share
(13:25):
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 the wheelchairs?
Their wheel chairs?
Speaker 5 (13:36):
Not yet? Not yet?
Speaker 4 (13:37):
They're still walking, which is amazing. My son's twelve, he's
doing really well. It is progressive, so from the onset
of like when you kind of notice those first couple
of 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.
(13:59):
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 3 (14:07):
But what they don't know where they don't know much
about it.
Speaker 1 (14:09):
How can they determine, say, well, by fourteen they'll be
at this age and by fifty, well it's so weird.
Speaker 5 (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 Dushan muscular dystrophe, which is like the one that
the more common one that most boys have, so they
kind of out of but it is hard to study
because this does have a lot of variability to it,
(14:42):
so some kids might you know, lose their ability to
walk at thirteen.
Speaker 5 (14:46):
Some kids might walk till twenty.
Speaker 3 (14:48):
It's hard to just don't know.
Speaker 5 (14:52):
Yeah, it's hard to tell.
Speaker 2 (14:54):
So are the signs different boys versus girls?
Speaker 5 (15:00):
Question? 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 valiations she was like two, so that's
always been like her. She's very dainty and box on
her toes. And a lot of kids walk on their
toes too, it's not like that uncommon, so with.
Speaker 3 (15:22):
You quit everything.
Speaker 5 (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
produce that. But my son at around like nine, So
what problemted me to test him was around nine years old.
Speaker 5 (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 alall 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 shifted,
(16:07):
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, if we had children,
what was his job his full time job or is
it still his full time job?
Speaker 5 (16:26):
It still is his full time job. So he is
a fourth generation.
Speaker 4 (16:31):
Wine and liquor retiller, So his family business has been
a They have five package stores in the Metro West
area of Boston.
Speaker 5 (16:41):
So he's still he's still runs clothes.
Speaker 4 (16:44):
He's he's very busy with that, of course, and he stays.
Speaker 3 (16:49):
Active with that. And the kids they go to school.
Speaker 1 (16:52):
They're not homeschools, but you go to school, but you're
traveling a lot for different What doctor's here exactly?
Speaker 5 (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):
What is over the company, Quinny, How hard is it
to raise money for this?
Speaker 5 (17:15):
It's really hard. I don't know if you've have our fundraised.
Speaker 1 (17:19):
Or anything, many many, many too, thirty something years of
my life. Yes, And the thing you hate most is
asking people for money.
Speaker 3 (17:28):
Right, It's like, uh, I know, and.
Speaker 5 (17:32):
You know, we're so lucky.
Speaker 4 (17:33):
Our community has really rallied like we right off right
out the gate.
Speaker 5 (17:36):
Our community is so you know, jumped right on board
to help.
Speaker 1 (17:40):
We had when you d community, when you say community,
which community, what part of Austin.
Speaker 5 (17:47):
So our local community.
Speaker 4 (17:49):
I'm from Boston, 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 families is
we we know a lot of people.
Speaker 5 (18:01):
I guess I don't know.
Speaker 1 (18:02):
So very Boston Thing, Newton Cohasset, Boston, Newton Co. Has
it at least for any 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?
Speaker 3 (18:16):
Can I call this person again?
Speaker 5 (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.
Speaker 3 (18:34):
Right, So it's trust me.
Speaker 5 (18:37):
I know, it's not like that's what I 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.
Speaker 5 (18:44):
We want to make a change for this community. This
community has been sitting here waiting for a treatment.
Speaker 3 (18:49):
Okay, hold that thought. We're going right out to break.
Speaker 1 (18:51):
I'm sending stumboing 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. Do you have
a name Samantha? For some reason, we are sharing one
mite tonight, okay, because we have a full studio, so
you and I gotta share.
Speaker 3 (19:09):
Mike, that's the worst.
Speaker 1 (19:10):
Usually Samantha's over the year, like way across from me,
which is really good.
Speaker 3 (19:15):
Right now. They're great. They're great.
Speaker 2 (19:19):
I can't think you're going on all.
Speaker 1 (19:21):
Right, but they can they take the glee away something.
Speaker 3 (19:26):
Yes, I know they're great though. I like them.
Speaker 1 (19:27):
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 asking you to discuss that.
(19:50):
My question to you is have your children got to
meet other kids that have exactly their disease they have?
Speaker 5 (19:58):
Yeah, and that has been so impactful.
Speaker 4 (20:00):
You know, you see these kids going through the same
thing that your children are going through.
Speaker 5 (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 kind of settled and 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 5 (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.
Speaker 3 (20:53):
Well, you guys doing all the heavy lifting, So.
Speaker 5 (20:56):
I mean 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 Dean Foundation. And then there
are other families that there's a family that has foundation
as well too, So they kind of did a lot
of work ten years ago. So they've been a huge
(21:22):
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.
Speaker 5 (21:36):
Community when we meet new patients.
Speaker 4 (21:40):
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?
Speaker 3 (21:50):
And why why? Yes?
Speaker 1 (21:52):
And why does this happen to us and have that
feel bad moment and then take yourself out and bring
yourself back to reality.
Speaker 3 (21:58):
How many times have you had a dog?
Speaker 4 (21:59):
Right?
Speaker 5 (22:00):
I mean, of course I think deep down daily right.
Speaker 3 (22:03):
Like but cooked, I'm sorry.
Speaker 5 (22:06):
I yeah, I think deep down daily.
Speaker 3 (22:08):
I have that.
Speaker 5 (22:08):
But also I have I have a lot of faith,
you know.
Speaker 4 (22:11):
I think that there there's 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.
Speaker 5 (22:25):
To make a change. You know, me and my husband
were both very relentless.
Speaker 4 (22:28):
We're both very stubborn, which in this sense has really
kind of 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 5 (22:39):
Want to drive.
Speaker 3 (22:39):
I hate to tell you, but that's a Boston thing. Okay.
We don't like the wood now and we hate the
word tomorrow. 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.
Speaker 3 (22:59):
You're just going to keep going through and keep going.
Speaker 5 (23:02):
And you know who's gonna fight for your kids?
Speaker 3 (23:05):
Like Noah, No, only the mother and father. That's it.
Speaker 1 (23:11):
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.
Speaker 3 (23:15):
And that's really the truth.
Speaker 1 (23:16):
Whether you know, we can love other people's kids, but
just is that your kids, right?
Speaker 3 (23:22):
So yeah, who said being a mom was easy?
Speaker 1 (23:26):
Never 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.
Speaker 3 (23:41):
Right, It's like, but.
Speaker 1 (23:43):
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 steparate
from the kids for like some some foundation works. So
we use that time to like, really, it's really nice
just by ourselves. 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
so a little crazy, so we use that.
Speaker 1 (24:08):
We got dogs and cats there too, Oh yeah, throw it.
Speaker 5 (24:11):
In the mix.
Speaker 3 (24:12):
Okay, how much more stress do you want? Hold on?
Speaker 1 (24:15):
We had 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. So it
helps when you come from a big family, it does.
I'm just sitting here watching you. You're beautiful, absolutely absolutely stunning,
(24:37):
beautiful you.
Speaker 2 (24:38):
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.
Speaker 3 (24:58):
But right, how hard is it?
Speaker 1 (25:01):
I was going to wait till after 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 gonna
go out my address. You can get your makeup done,
(25:23):
and he had done, and you could have donated that money.
Speaker 3 (25:26):
That's how I see exactly.
Speaker 5 (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 5 (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.
We we do. We've had we've had a few really
successful events like what we have a local five k
that has we've run two years now in a row
(25:58):
and it's been you know, four hundred and people showed up.
Speaker 5 (26:01):
It's been amazing. It's been a huge turnout.
Speaker 3 (26:03):
That was and what is that.
Speaker 5 (26:06):
Like a walk run?
Speaker 4 (26:08):
That was great because it really catered to families and
like families could.
Speaker 5 (26:12):
Come show up, kids could come show up. So it
was 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.
Speaker 5 (26:28):
I'll come support them.
Speaker 4 (26:29):
Great, So it's 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 successful
golf tournaments, which you know, caters to like more of
the guys side.
Speaker 5 (26:42):
So we're kind of just trying to hit different crowds
if you can kind of catch where we're going at.
Speaker 4 (26:46):
I do want once 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 5 (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 in 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.
(27:23):
No problem, 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 comes
out and everybody's bidding this and bidding up and yeah, yes, yeah.
Speaker 5 (27:41):
And then I just just last month we had it autoin.
It was so fun. We had it. It was like
full fund 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 tippt
got dom like all their chips and stuff like that,
so really big had to buy the ticket to come on, and.
Speaker 5 (28:02):
We had like cocktail attires. 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 5 (28:15):
So I think that that will be like definitely an
inaugural I mean a yearly.
Speaker 4 (28:19):
Thing for us because people just had a blast and
everyone's like next year more time. We need more time
also too. For the past few years we have done
a Boston ad On team. 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 mottol is
(28:41):
running for those who can't, because my daughter says, like,
one day I want to run the marathon.
Speaker 5 (28:46):
And you know, that's a dream.
Speaker 4 (28:48):
That's something that these kids, that's something that they can
have some day if we can make a change, you know.
Speaker 3 (28:57):
Okay, let's hold that thought from minute. We're going out
to break.
Speaker 1 (29:00):
I'm Cindy Stumple and you listen 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 she says, she's a cancer, right, and
I'm a cancer. So as we're looking at each other
(29:20):
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 EmPATH but we just
feel we feel it.
Speaker 2 (29:29):
What are you kids?
Speaker 4 (29:31):
What are My son's a libra, which she said totallybra.
He's like he's just like a dream boy, you know.
Speaker 3 (29:38):
Yeah, they don't want to fight. Go ahead?
Speaker 5 (29:40):
Is that? That's my oldest And then my second is
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 he's warman affection, Yeah, warm affection like you you
know you you are a very warm person for sure,
and you'll do for the world. But man, 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.
Speaker 3 (30:19):
Isn't that crazy?
Speaker 1 (30:21):
Like you can blast off of five minutes and put
it right back in and you're over it and you're like,
let's go for dinner. But the other person is going
you want to go for dinner? Like you just flipped
out and freak. Yeah, it's over. It's just nothing.
Speaker 4 (30:33):
What do they say, like your box is worse than
your bite?
Speaker 3 (30:36):
Oh yeah, threat, I just threatened.
Speaker 5 (30:40):
What is your daughter? She's a pison? Oh my god.
Speaker 3 (30:43):
She is like I'll just.
Speaker 4 (30:46):
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 it starts, yeah.
Speaker 3 (30:57):
The girl drama.
Speaker 4 (30:59):
It's so funny, Like honestly, I'm like, wow, Actually, God
knew what.
Speaker 5 (31:03):
He was doing, given me only one because this has
had like that ship.
Speaker 1 (31:08):
You should understand her more than anybody because you're auto sensive,
but she just takes to a whole nother level without
the your alter sensive. But you get somewhat of a backbone,
the like, well, now.
Speaker 2 (31:20):
I know why her middle is the way he is.
He's Leo, So he's very decisive compared to the other two.
Speaker 3 (31:26):
Is he very decisive?
Speaker 5 (31:28):
Yeah?
Speaker 3 (31:29):
Yeah, he's a sign fire.
Speaker 5 (31:32):
Yeah, he's considered business like, he's.
Speaker 1 (31:35):
Just like you know, so tell us, how can my
listeners help you? How can the stumpos help you?
Speaker 3 (31:44):
Coney and lay it on thick.
Speaker 1 (31:47):
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 don't care. It's it's a it's a cup of
stop Bucks coffee or donkeys. Right, I'm a donkey, she's
a donkey's. You're both donkeys. But of course my son's
a stop Bucks. Right, you're both okay, Well, I'm a donkey's.
(32:11):
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
fifteen dollars, right or whatever.
Speaker 3 (32:20):
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 5 (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.
Speaker 5 (33:02):
Absolutely.
Speaker 1 (33:03):
So just you have your phone. I'm not I can't
see you from over here. Hold on, Sam, you're in
the way. Okay, thank you. I just want to see
where phone is.
Speaker 3 (33:14):
Okay, So what you.
Speaker 1 (33:15):
Do is you tag Cyddy stumpo builder and then I
can share the story Sydney say Andy, why stump Builder?
Speaker 5 (33:28):
I got it? Beare five check follow? Okay, I will,
I will share you, I will post.
Speaker 4 (33:35):
I will post a story and share it and I'll
tag your 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 that Onstagram.
Speaker 3 (33:47):
Okay. What's so?
Speaker 1 (33:48):
We just you know, what's the mission for this year?
Like how much money you guys a looking to raise?
Speaker 5 (33:54):
So we didn't really touch on it.
Speaker 4 (33:56):
But we have. We have committed into working with a
French company that is developing in gene therapy treatment. It
would be the first of its kind for our children's
form musculardystrophe.
Speaker 5 (34:10):
We have permitted 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.
Speaker 5 (34:28):
So we this over the past two years.
Speaker 4 (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.
Speaker 5 (34:43):
You know, we want to help advance this clinical trial
to further more patients.
Speaker 4 (34:50):
We want to 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 muscular
district and then also other forms of muscular district who
are sitting and waiting for cures too.
Speaker 5 (35:03):
So you know, this is really just the beginning for us.
Speaker 3 (35:07):
How far they've come with MS in the last fifty years.
Speaker 5 (35:13):
Yeah, it's a huge question. Since the was it Johnny
Carson or.
Speaker 3 (35:16):
Who was it Jerry Lewis?
Speaker 4 (35:18):
Since the telethon Jerry Lewis, Since the telethon, now the
MDA has supported research.
Speaker 5 (35:28):
Now as of last.
Speaker 4 (35:30):
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 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 districte.
(35:53):
It's a huge leap, Like you know, small step for man,
big leap for mankind type thing. It's a huge step
that there is a therapy available for this first ever.
Speaker 5 (36:04):
So that kind of sets the landscape.
Speaker 4 (36:07):
For you know, now this ALGI of rare types to
really try to you know, get a treatment and develops
as well.
Speaker 1 (36:16):
You 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 5 (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, but again scientists.
Speaker 2 (36:50):
Then mnologist is not that I can pronounce that.
Speaker 5 (36:56):
Immunology. He's an immunologist.
Speaker 4 (36:58):
Yes, 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.
Speaker 5 (37:12):
Actually, Okay, and that's.
Speaker 4 (37:13):
Kind of you know, Cindy, that's kind of something that
we've done since since our diagnoses two and a half
years ago. We anyone who says, okay, I'm good, give
me the number. We call were banged down doors type
can help us, like we are calling. We've been calling
him favors. People give us a number. We called them,
We set up meetings. We like, how can we help them?
Speaker 1 (37:31):
Might be a lucky day because I'm in the middle
of another build out for him for the family, Like
this is the third house, Okay, third perfect, this is
for the daughter.
Speaker 3 (37:41):
But let's talk about MS honors Wikipedia.
Speaker 5 (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 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 two.
Speaker 5 (38:15):
By don't worry.
Speaker 3 (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 5 (38:27):
You know.
Speaker 1 (38:28):
So so what we have been coming up right now
for what's your next event? That if people want to jump.
Speaker 4 (38:35):
On and.
Speaker 3 (38:38):
The whole problem your pockets and give money. I'm telling people,
go in your pockets and give money. Stop being cheap.
Go ahead, yeah they in the fall.
Speaker 5 (38:49):
Would you are muscle for the muscle five k?
Speaker 4 (38:52):
But you know, we do have a marathhone runners right
now if anyone is inclined to support them, and of
course obviously donations on the d on fund dot org.
Speaker 3 (39:02):
Okay, well d I O N.
Speaker 1 (39:05):
Well you say that when 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 listen to City
Snuffo and on Toughest Nails on WZ. We'll be right
back and welcome back to Toughest Nails on WBZ.
Speaker 2 (39:17):
Courtney. How do people get in touch with you?
Speaker 3 (39:19):
Yeah, Courtney in Boston, stay with your boss. It's okay,
you can use your boss accent.
Speaker 5 (39:27):
Yeah. So you can check out our website www dot
d on fund dot org.
Speaker 3 (39:31):
Also try that again. People need to hear that www dot.
Speaker 5 (39:36):
D on fund dot org.
Speaker 4 (39:38):
All right, and then at the Dion Foundation on Instagram
and any any contribution counts. We are funding the first
ever clinical 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 Tap 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 I.
Speaker 2 (00:07):
Have to pull this over?
Speaker 3 (00:08):
And Sam Samantha. Okay, why are we doing it that way?
Speaker 4 (00:11):
To me?
Speaker 5 (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.
Speaker 3 (00:20):
Okay, we're back, are you guys, mother daughter?
Speaker 1 (00:23):
Yes, yes, she's the mother daughter. I switched the roles. Okay,
I want to now put all the pressure on her.
Speaker 3 (00:31):
Okay. Who's in the studio tonight.
Speaker 5 (00:32):
Sure. My name is Courtney Dion.
Speaker 4 (00:35):
I'm from Boston, mass 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 all of our children with an
ultra rare form of muscular districty.
Speaker 1 (00:56):
So two children and they don't it's a genetic or
it just happens, or it is.
Speaker 5 (01:03):
So we have three kids and no family history of
this at all.
Speaker 4 (01:07):
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 found the wrong purse, and you know, and
each one of our children had a one and four
chance of inheriting this disease.
Speaker 5 (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.
Speaker 3 (01:28):
So the first one you.
Speaker 5 (01:29):
Have, 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. It's not that's something that
they see on ultrasounds. It's not something that shows up
enough blood tests unless you're looking for it. And it's
so ultra rare that it's not on like the newborn
screening panel or anything like that. So my son was
diagnosed in the summer, at the end of the summer
(01:52):
in twenty twenty two, and you know, after some changes
in his strength and his ability, I thing was wrong
with him. I have a background 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
(02:15):
got him tested and it turned out that he had
this ultrawear form of muscular dystrophy. And through my research,
you know, once we learned that it actually could affect
males and females unlike some other forms of muscular dystrophe.
Speaker 5 (02:29):
My husband and I kind of are kind of saw
a little bit of the.
Speaker 4 (02:33):
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 5 (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 3 (02:51):
My son was nine, Okay, got it all right.
Speaker 5 (02:54):
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 met and have children and
bring children this way.
Speaker 4 (03:02):
I know.
Speaker 5 (03:02):
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 3 (03:15):
So not your your husband not your mom and dad,
not his mom and dad.
Speaker 5 (03:21):
No, no family history of this.
Speaker 2 (03:24):
Really, what were the early signs that you were seeing?
Speaker 5 (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 3 (03:32):
More importantly, so.
Speaker 4 (03:34):
We haven't done like a twenty three of me or
anything like that on our ancestors.
Speaker 3 (03:39):
Do you know that you could? Do you know anything
about your great grandparents?
Speaker 4 (03:44):
Like? Yeah, and that's the hard thing too, Like we're
all at 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 5 (03:57):
In Ireland had this disease and they just see.
Speaker 1 (04:02):
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 it or not, till she was six or seven.
Her great great grandfather too, which would have been papa's father.
(04:23):
Do you understand my father, Yes, you're a papa. And
then his father's alive, Yeah, that would be your great grandfather.
Speaker 3 (04:30):
I don't remember him, though, right, Papa Frank.
Speaker 1 (04:31):
But my kids were born and I was born and
my husbin 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 3 (04:40):
Your father has a too, Yeah, but I'm.
Speaker 2 (04:42):
Saying I don't know Dad's great glad.
Speaker 3 (04:44):
Past that conversation.
Speaker 1 (04:46):
So we are they're born with what I'm born with,
and what Joe's born with is what's it called lip
a protein?
Speaker 3 (04:53):
Lipoprotein A?
Speaker 1 (04:54):
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.
Speaker 5 (05:04):
So 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 cholesterol.
She had highcholesterol, Like why ship 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 you
(05:28):
find out so much now about you.
Speaker 2 (05:30):
Never had a heart attack. He probably wouldn't have checked
for whatever.
Speaker 1 (05:32):
You would 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
knew what we knew, if we knew, I know, we didn't,
so he's got to roll it out. Okay, So we
what tell me what you have been doing since both
(05:53):
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 was gonna live our lives and
everybody's gonna you went down.
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.
Speaker 5 (06:26):
You know, there is some science. There's some research for
a treatment.
Speaker 4 (06:31):
The treatment for something like this would actually be a
gene therapy treatment where they go and replace them the mutated.
Speaker 5 (06:38):
Gene with the healthy gene. 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 would be
like literally nothing on the Internet. You couldn't even Google it.
So right when that happened, we kind of we dove in.
We we you know, 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
(07:03):
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 asking how can we help?
Speaker 5 (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.
Speaker 5 (07:22):
We were going to form a foundation.
Speaker 4 (07:24):
We were going to start raising some money, we were
going to start raising awareness, and we were going to try.
Speaker 5 (07:28):
To really make a change.
Speaker 3 (07:29):
How weird is this MS that they have?
Speaker 5 (07:33):
So it's must be a Districtye, 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 5 (07:43):
The numbers worldwide, don't cut off.
Speaker 3 (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.
Speaker 3 (07:59):
Lewis, Yes, and we grew up at that.
Speaker 1 (08:02):
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.
Speaker 5 (08:11):
Took 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 Didstripte 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 musculardystrophe is that
there are over like forty some types. Our type is
(08:41):
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 3 (08:53):
Do me a favorite show?
Speaker 1 (08:55):
Hold that thoughtful Woman? We just got to go off
to break I'm Sitty Snubb. When you listen to Tough
as Nails on WBZ, you will be right back and
welcome back to the Toughest Nails.
Speaker 3 (09:02):
I'm Cindy Stumpo. When you're in the studio tonight with.
Speaker 1 (09:04):
Who, Samantha and Courtney Okay, Courtney, pick up where we
left off. Go ahead, I'll stopped you.
Speaker 4 (09:15):
You know, the science has come so far in the
past twenty years, Like it really is remarkable. They're able
to with gene therapy, 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.
So the good that's the good news that you know,
it's twenty twenty five.
Speaker 1 (09:36):
Is that helping the time? Is that helping children? I'm sorry,
is that helping your children right now?
Speaker 5 (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, dire unmet needs. Do
these kids there are children, that's it's a pediatric disease.
So these children are just sitting there waiting for a care.
So that's why we really just dove in. We're like,
you know what, the time is going to pass anyway,
We're going to do.
Speaker 5 (10:13):
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.
Speaker 5 (10:42):
I'm going through and vice for ourself.
Speaker 4 (10:44):
Only I know what he's going through, and it's I'm
incredibly close with my family.
Speaker 5 (10:48):
I'm incredibly close with my sisters.
Speaker 4 (10:50):
He's incredibly close with his family, But like, at the
end of the day, only he and I know what
this pain feels like.
Speaker 5 (10:57):
So while I never.
Speaker 4 (10:59):
Wanted to go into business with him or work with
him in any capacity at all, you know, husband and wife.
Speaker 5 (11:03):
That's it. 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 5 (11:09):
Because it's like, Okay, you do this, I do that.
Speaker 4 (11:11):
But at the end of the day, he and I
were in this together and only us. Only he and
I are going.
Speaker 5 (11:20):
To want to fight for those kids. You know we can't,
we will will. Both of us would.
Speaker 4 (11:26):
Give our lives for them, So having that bond has
definitely brought us closer together in the past two years.
Speaker 3 (11:31):
And then you have a third child that's very healthy.
Speaker 5 (11:35):
Yes, he's a good middle So my oldest and my
oldest is.
Speaker 4 (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?
Speaker 3 (11:50):
Does he? How old is Luke?
Speaker 5 (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 looking
up for him, like will help pick him up if
he needs to.
Speaker 5 (12:06):
And he's such a trooper.
Speaker 4 (12:07):
Like the past two years we've been traveling NonStop, we've
been traveling all over the country for medical means, traveling
for conferences, like we've had to.
Speaker 5 (12:15):
Totally change our whole lives. And he is just.
Speaker 4 (12:20):
He's adapted so well. He's 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
Meddle child already he's already a middle child.
Speaker 1 (12:31):
So yeah, but he's the man that's going to pick
up a lot of responsibility without even knowing he's doing it,
you know. So he gets to probably that age, the
teenage years, where he goes, Okay, I'm all 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
(12:52):
than he is younger. Does he other ask you you, mommy,
how come I didn't get this at a young age
or anything?
Speaker 3 (12:57):
Or no?
Speaker 4 (12:59):
Yeah, so so definitely all three of them have asked
why you know, why?
Speaker 5 (13:03):
Why me? And why not live?
Speaker 4 (13:04):
The kids have asked that, and Lucas asked, why didn't
I get it? 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. If you don't
explain things, they're going to be anxious and worry and stuff.
And of course the severity of this illness is incredibly
scary to chair share with children, but so we share
(13:25):
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 the wheelchairs?
Their wheel chairs?
Speaker 5 (13:36):
Not yet? Not yet?
Speaker 4 (13:37):
They're still walking, which is amazing. My son's twelve, he's
doing really well. It is progressive, so from the onset
of like when you kind of notice those first couple
of 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.
(13:59):
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 3 (14:07):
But what they don't know where they don't know much
about it.
Speaker 1 (14:09):
How can they determine, say, well, by fourteen they'll be
at this age and by fifty, well it's so weird.
Speaker 5 (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 Dushan muscular dystrophe, which is like the one that
the more common one that most boys have, so they
kind of out of but it is hard to study
because this does have a lot of variability to it,
(14:42):
so some kids might you know, lose their ability to
walk at thirteen.
Speaker 5 (14:46):
Some kids might walk till twenty.
Speaker 3 (14:48):
It's hard to just don't know.
Speaker 5 (14:52):
Yeah, it's hard to tell.
Speaker 2 (14:54):
So are the signs different boys versus girls?
Speaker 5 (15:00):
Question? 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 valiations she was like two, so that's
always been like her. She's very dainty and box on
her toes. And a lot of kids walk on their
toes too, it's not like that uncommon, so with.
Speaker 3 (15:22):
You quit everything.
Speaker 5 (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
produce that. But my son at around like nine, So
what problemted me to test him was around nine years old.
Speaker 5 (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 alall 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 shifted,
(16:07):
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, if we had children,
what was his job his full time job or is
it still his full time job?
Speaker 5 (16:26):
It still is his full time job. So he is
a fourth generation.
Speaker 4 (16:31):
Wine and liquor retiller, So his family business has been
a They have five package stores in the Metro West
area of Boston.
Speaker 5 (16:41):
So he's still he's still runs clothes.
Speaker 4 (16:44):
He's he's very busy with that, of course, and he stays.
Speaker 3 (16:49):
Active with that. And the kids they go to school.
Speaker 1 (16:52):
They're not homeschools, but you go to school, but you're
traveling a lot for different What doctor's here exactly?
Speaker 5 (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):
What is over the company, Quinny, How hard is it
to raise money for this?
Speaker 5 (17:15):
It's really hard. I don't know if you've have our fundraised.
Speaker 1 (17:19):
Or anything, many many, many too, thirty something years of
my life. Yes, And the thing you hate most is
asking people for money.
Speaker 3 (17:28):
Right, It's like, uh, I know, and.
Speaker 5 (17:32):
You know, we're so lucky.
Speaker 4 (17:33):
Our community has really rallied like we right off right
out the gate.
Speaker 5 (17:36):
Our community is so you know, jumped right on board
to help.
Speaker 1 (17:40):
We had when you d community, when you say community,
which community, what part of Austin.
Speaker 5 (17:47):
So our local community.
Speaker 4 (17:49):
I'm from Boston, 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 families is
we we know a lot of people.
Speaker 5 (18:01):
I guess I don't know.
Speaker 1 (18:02):
So very Boston Thing, Newton Cohasset, Boston, Newton Co. Has
it at least for any 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?
Speaker 3 (18:16):
Can I call this person again?
Speaker 5 (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.
Speaker 3 (18:34):
Right, So it's trust me.
Speaker 5 (18:37):
I know, it's not like that's what I 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.
Speaker 5 (18:44):
We want to make a change for this community. This
community has been sitting here waiting for a treatment.
Speaker 3 (18:49):
Okay, hold that thought. We're going right out to break.
Speaker 1 (18:51):
I'm sending stumboing 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. Do you have
a name Samantha? For some reason, we are sharing one
mite tonight, okay, because we have a full studio, so
you and I gotta share.
Speaker 3 (19:09):
Mike, that's the worst.
Speaker 1 (19:10):
Usually Samantha's over the year, like way across from me,
which is really good.
Speaker 3 (19:15):
Right now. They're great. They're great.
Speaker 2 (19:19):
I can't think you're going on all.
Speaker 1 (19:21):
Right, but they can they take the glee away something.
Speaker 3 (19:26):
Yes, I know they're great though. I like them.
Speaker 1 (19:27):
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 asking you to discuss that.
(19:50):
My question to you is have your children got to
meet other kids that have exactly their disease they have?
Speaker 5 (19:58):
Yeah, and that has been so impactful.
Speaker 4 (20:00):
You know, you see these kids going through the same
thing that your children are going through.
Speaker 5 (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 kind of settled and 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 5 (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.
Speaker 3 (20:53):
Well, you guys doing all the heavy lifting, So.
Speaker 5 (20:56):
I mean 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 Dean Foundation. And then there
are other families that there's a family that has foundation
as well too, So they kind of did a lot
of work ten years ago. So they've been a huge
(21:22):
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.
Speaker 5 (21:36):
Community when we meet new patients.
Speaker 4 (21:40):
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?
Speaker 3 (21:50):
And why why? Yes?
Speaker 1 (21:52):
And why does this happen to us and have that
feel bad moment and then take yourself out and bring
yourself back to reality.
Speaker 3 (21:58):
How many times have you had a dog?
Speaker 4 (21:59):
Right?
Speaker 5 (22:00):
I mean, of course I think deep down daily right.
Speaker 3 (22:03):
Like but cooked, I'm sorry.
Speaker 5 (22:06):
I yeah, I think deep down daily.
Speaker 3 (22:08):
I have that.
Speaker 5 (22:08):
But also I have I have a lot of faith,
you know.
Speaker 4 (22:11):
I think that there there's 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.
Speaker 5 (22:25):
To make a change. You know, me and my husband
were both very relentless.
Speaker 4 (22:28):
We're both very stubborn, which in this sense has really
kind of 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 5 (22:39):
Want to drive.
Speaker 3 (22:39):
I hate to tell you, but that's a Boston thing. Okay.
We don't like the wood now and we hate the
word tomorrow. 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.
Speaker 3 (22:59):
You're just going to keep going through and keep going.
Speaker 5 (23:02):
And you know who's gonna fight for your kids?
Speaker 3 (23:05):
Like Noah, No, only the mother and father. That's it.
Speaker 1 (23:11):
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.
Speaker 3 (23:15):
And that's really the truth.
Speaker 1 (23:16):
Whether you know, we can love other people's kids, but
just is that your kids, right?
Speaker 3 (23:22):
So yeah, who said being a mom was easy?
Speaker 1 (23:26):
Never 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.
Speaker 3 (23:41):
Right, It's like, but.
Speaker 1 (23:43):
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 steparate
from the kids for like some some foundation works. So
we use that time to like, really, it's really nice
just by ourselves. 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
so a little crazy, so we use that.
Speaker 1 (24:08):
We got dogs and cats there too, Oh yeah, throw it.
Speaker 5 (24:11):
In the mix.
Speaker 3 (24:12):
Okay, how much more stress do you want? Hold on?
Speaker 1 (24:15):
We had 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. So it
helps when you come from a big family, it does.
I'm just sitting here watching you. You're beautiful, absolutely absolutely stunning,
(24:37):
beautiful you.
Speaker 2 (24:38):
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.
Speaker 3 (24:58):
But right, how hard is it?
Speaker 1 (25:01):
I was going to wait till after 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 gonna
go out my address. You can get your makeup done,
(25:23):
and he had done, and you could have donated that money.
Speaker 3 (25:26):
That's how I see exactly.
Speaker 5 (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 5 (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.
We we do. We've had we've had a few really
successful events like what we have a local five k
that has we've run two years now in a row
(25:58):
and it's been you know, four hundred and people showed up.
Speaker 5 (26:01):
It's been amazing. It's been a huge turnout.
Speaker 3 (26:03):
That was and what is that.
Speaker 5 (26:06):
Like a walk run?
Speaker 4 (26:08):
That was great because it really catered to families and
like families could.
Speaker 5 (26:12):
Come show up, kids could come show up. So it
was 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.
Speaker 5 (26:28):
I'll come support them.
Speaker 4 (26:29):
Great, So it's 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 successful
golf tournaments, which you know, caters to like more of
the guys side.
Speaker 5 (26:42):
So we're kind of just trying to hit different crowds
if you can kind of catch where we're going at.
Speaker 4 (26:46):
I do want once 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 5 (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 in 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.
(27:23):
No problem, 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 comes
out and everybody's bidding this and bidding up and yeah, yes, yeah.
Speaker 5 (27:41):
And then I just just last month we had it autoin.
It was so fun. We had it. It was like
full fund 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 tippt
got dom like all their chips and stuff like that,
so really big had to buy the ticket to come on, and.
Speaker 5 (28:02):
We had like cocktail attires. 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 5 (28:15):
So I think that that will be like definitely an
inaugural I mean a yearly.
Speaker 4 (28:19):
Thing for us because people just had a blast and
everyone's like next year more time. We need more time
also too. For the past few years we have done
a Boston ad On team. 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 mottol is
(28:41):
running for those who can't, because my daughter says, like,
one day I want to run the marathon.
Speaker 5 (28:46):
And you know, that's a dream.
Speaker 4 (28:48):
That's something that these kids, that's something that they can
have some day if we can make a change, you know.
Speaker 3 (28:57):
Okay, let's hold that thought from minute. We're going out
to break.
Speaker 1 (29:00):
I'm Cindy Stumple and you listen 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 she says, she's a cancer, right, and
I'm a cancer. So as we're looking at each other
(29:20):
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 EmPATH but we just
feel we feel it.
Speaker 2 (29:29):
What are you kids?
Speaker 4 (29:31):
What are My son's a libra, which she said totallybra.
He's like he's just like a dream boy, you know.
Speaker 3 (29:38):
Yeah, they don't want to fight. Go ahead?
Speaker 5 (29:40):
Is that? That's my oldest And then my second is
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 he's warman affection, Yeah, warm affection like you you
know you you are a very warm person for sure,
and you'll do for the world. But man, 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.
Speaker 3 (30:19):
Isn't that crazy?
Speaker 1 (30:21):
Like you can blast off of five minutes and put
it right back in and you're over it and you're like,
let's go for dinner. But the other person is going
you want to go for dinner? Like you just flipped
out and freak. Yeah, it's over. It's just nothing.
Speaker 4 (30:33):
What do they say, like your box is worse than
your bite?
Speaker 3 (30:36):
Oh yeah, threat, I just threatened.
Speaker 5 (30:40):
What is your daughter? She's a pison? Oh my god.
Speaker 3 (30:43):
She is like I'll just.
Speaker 4 (30:46):
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 it starts, yeah.
Speaker 3 (30:57):
The girl drama.
Speaker 4 (30:59):
It's so funny, Like honestly, I'm like, wow, Actually, God
knew what.
Speaker 5 (31:03):
He was doing, given me only one because this has
had like that ship.
Speaker 1 (31:08):
You should understand her more than anybody because you're auto sensive,
but she just takes to a whole nother level without
the your alter sensive. But you get somewhat of a backbone,
the like, well, now.
Speaker 2 (31:20):
I know why her middle is the way he is.
He's Leo, So he's very decisive compared to the other two.
Speaker 3 (31:26):
Is he very decisive?
Speaker 5 (31:28):
Yeah?
Speaker 3 (31:29):
Yeah, he's a sign fire.
Speaker 5 (31:32):
Yeah, he's considered business like, he's.
Speaker 1 (31:35):
Just like you know, so tell us, how can my
listeners help you? How can the stumpos help you?
Speaker 3 (31:44):
Coney and lay it on thick.
Speaker 1 (31:47):
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 don't care. It's it's a it's a cup of
stop Bucks coffee or donkeys. Right, I'm a donkey, she's
a donkey's. You're both donkeys. But of course my son's
a stop Bucks. Right, you're both okay, Well, I'm a donkey's.
(32:11):
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
fifteen dollars, right or whatever.
Speaker 3 (32:20):
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 5 (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.
Speaker 5 (33:02):
Absolutely.
Speaker 1 (33:03):
So just you have your phone. I'm not I can't
see you from over here. Hold on, Sam, you're in
the way. Okay, thank you. I just want to see
where phone is.
Speaker 3 (33:14):
Okay, So what you.
Speaker 1 (33:15):
Do is you tag Cyddy stumpo builder and then I
can share the story Sydney say Andy, why stump Builder?
Speaker 5 (33:28):
I got it? Beare five check follow? Okay, I will,
I will share you, I will post.
Speaker 4 (33:35):
I will post a story and share it and I'll
tag your 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 that Onstagram.
Speaker 3 (33:47):
Okay. What's so?
Speaker 1 (33:48):
We just you know, what's the mission for this year?
Like how much money you guys a looking to raise?
Speaker 5 (33:54):
So we didn't really touch on it.
Speaker 4 (33:56):
But we have. We have committed into working with a
French company that is developing in gene therapy treatment. It
would be the first of its kind for our children's
form musculardystrophe.
Speaker 5 (34:10):
We have permitted 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.
Speaker 5 (34:28):
So we this over the past two years.
Speaker 4 (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.
Speaker 5 (34:43):
You know, we want to help advance this clinical trial
to further more patients.
Speaker 4 (34:50):
We want to 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 muscular
district and then also other forms of muscular district who
are sitting and waiting for cures too.
Speaker 5 (35:03):
So you know, this is really just the beginning for us.
Speaker 3 (35:07):
How far they've come with MS in the last fifty years.
Speaker 5 (35:13):
Yeah, it's a huge question. Since the was it Johnny
Carson or.
Speaker 3 (35:16):
Who was it Jerry Lewis?
Speaker 4 (35:18):
Since the telethon Jerry Lewis, Since the telethon, now the
MDA has supported research.
Speaker 5 (35:28):
Now as of last.
Speaker 4 (35:30):
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 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 districte.
(35:53):
It's a huge leap, Like you know, small step for man,
big leap for mankind type thing. It's a huge step
that there is a therapy available for this first ever.
Speaker 5 (36:04):
So that kind of sets the landscape.
Speaker 4 (36:07):
For you know, now this ALGI of rare types to
really try to you know, get a treatment and develops
as well.
Speaker 1 (36:16):
You 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 5 (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, but again scientists.
Speaker 2 (36:50):
Then mnologist is not that I can pronounce that.
Speaker 5 (36:56):
Immunology. He's an immunologist.
Speaker 4 (36:58):
Yes, 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.
Speaker 5 (37:12):
Actually, Okay, and that's.
Speaker 4 (37:13):
Kind of you know, Cindy, that's kind of something that
we've done since since our diagnoses two and a half
years ago. We anyone who says, okay, I'm good, give
me the number. We call were banged down doors type
can help us, like we are calling. We've been calling
him favors. People give us a number. We called them,
We set up meetings. We like, how can we help them?
Speaker 1 (37:31):
Might be a lucky day because I'm in the middle
of another build out for him for the family, Like
this is the third house, Okay, third perfect, this is
for the daughter.
Speaker 3 (37:41):
But let's talk about MS honors Wikipedia.
Speaker 5 (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 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 two.
Speaker 5 (38:15):
By don't worry.
Speaker 3 (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 5 (38:27):
You know.
Speaker 1 (38:28):
So so what we have been coming up right now
for what's your next event? That if people want to jump.
Speaker 4 (38:35):
On and.
Speaker 3 (38:38):
The whole problem your pockets and give money. I'm telling people,
go in your pockets and give money. Stop being cheap.
Go ahead, yeah they in the fall.
Speaker 5 (38:49):
Would you are muscle for the muscle five k?
Speaker 4 (38:52):
But you know, we do have a marathhone runners right
now if anyone is inclined to support them, and of
course obviously donations on the d on fund dot org.
Speaker 3 (39:02):
Okay, well d I O N.
Speaker 1 (39:05):
Well you say that when 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 listen to City
Snuffo and on Toughest Nails on WZ. We'll be right
back and welcome back to Toughest Nails on WBZ.
Speaker 2 (39:17):
Courtney. How do people get in touch with you?
Speaker 3 (39:19):
Yeah, Courtney in Boston, stay with your boss. It's okay,
you can use your boss accent.
Speaker 5 (39:27):
Yeah. So you can check out our website www dot
d on fund dot org.
Speaker 3 (39:31):
Also try that again. People need to hear that www dot.
Speaker 5 (39:36):
D on fund dot org.
Speaker 4 (39:38):
All right, and then at the Dion Foundation on Instagram
and any any contribution counts. We are funding the first
ever clinical 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 Tap his Nails on WBZ News
Radio ten thirty
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