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