The Dion Fund

And welcome to Cindy Stumpo Tough his nails on WBZ News Radio ten thirty And I'm here tonight with who.

I have to pull this over? And Sam Samantha.

Okay, why are we doing it that way today?

There's no option?

Okay, this is okay, this is what's going on here. Okay, I'm gonna get I'm trying to get myself situated. We had nice face care. Okay, we're back.

Are you guys from mother daughter?

Yes, yes, she's the mother daughter. I switched the roles. Okay, I'm going to now put all the pressure on her. Okay. Who's in the studio tonight.

Sure. My name is Courtney Dion. 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 of our children with an ultrawar form of muscular distripty.

So two children and they don't it's a genetic or it just happens, or it is.

So we have three kids and no family history of this at all. But it is what they call an autosomal recessive gene, so meaning I can carry it in mind family for years, and my husband carried in his family for years, and we just.

Found the wrong person, you know.

And each one of our children had a one and four chance of inheriting this disease.

So two of our three kids have it.

And they said, you after the first one, obviously explain that to me. So the first one you have.

So I'll kind of go through the diagnosis.

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 he 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 in twenty twenty two, and you know, after some of some changes in his strength and his ability.

I thing was wrong with him.

I have a background, I as a registered there, so I kind of just remembered like, oh, you know, some of these childhood onset diseases happened when you're like six or seven, not at birth, you know. So we got him tested and it turned out that he had this ultrawear form of muscular dystrophe. And through my research, you know, once we learned that it actually could affect males and

So when she was born, you wouldn't have genetically tested her for this.

We didn't know.

Yeah, we could have, we could have, but we wouldn't have known. We didn't know until.

My son was nine, Okay, got it all.

Right, until the symptoms started showing up.

See that's why I say we should do genetic testing with each other before we marry and have children and bring children.

This way, I know, it's like if we knew this, you know, we did.

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.

So not your your husband, not your mom and dad, not his mom and dad.

No, no family history of this.

Really, what were the early signs that you were seeing?

No?

But I want to how you know it's a genetic if you where do you trace it back to?

More importantly, so, we haven't done like a twenty three of me or anything like that on our ancestors.

Do you know you could? Do you know anything about your great grandparents?

Like?

Yeah, and that's the hard thing too, Like we're all of this age where like your great grandparents, great great grandparents are immigrants, you know, so like the family history is not like one hundred percent you know, documented, It's like who knows, someone may maybe way back.

In Ireland had this disease and they.

Just see you. That's what We're kind of lucky because I've known up to my great great grandparents. On one side, I had my great great grandparents. Sammy goes as far up as her believe or not, till she was six or seven. Her great great grandfather too, which would have been papa's father. Do you understand my father, Yes, you're a papa. And then his father's alive, Yeah, that would be your great grandfather.

I don't remember him.

Though, right, Papa Frank. But my kids were born and I was born and my ex husband was born with we all, what's the chances we all have this?

Well, your side but not Dad's.

Your father has a too.

Yeah, but I'm saying I don't know Dad's great.

Boring past that conversation. So we are they're born with what I'm born with, and what Joe's born with is what's it called lip protein? Lipoprotein A, Like, what's the chances that I knew when I married him he was going to have it and I was going to have it? And now both of our kids have it, right, So they're cholesterol exactly, So.

That's the same, same idea.

But it was kind of funny because when she was like I'd say eight or nine or ten around there, twelve high school. High school is when I had high cholestero. She had highcholesterol, Like why she had high cholesterol? Never had it again? It balanced, but she went through a period no medication, but that was probably from her having but they never checked for it. It's just crazy how you find out so much now about.

You never had a heart attack, He probably wouldn't have checked for whatever.

You have never checked, but he had a he had a widows that lived through it. But anyways, we'll go back genetics. Just if we knew, yeah, if we.

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 your children came down. You have this foundation. I want my listeners to hear. You could have just been a yeah mom and said, okay, well we have two kids with MS and we're going to live our lives and everybody's gonna.

So you know, after the diagnoses of two of our kids, we went through the we went through the stages of grief absolutely, like denialing, the bargaining, depression, acceptance, over and over again, and we kind of through our research. You know, there is some science. There's some research for a treatment. The treatment for something like this would actually be a gene therapy treatment where they go and replace them the mutated gene with the healthy gene.

So there is some science.

Luckily, the science has come so far in twenty years whereas if this was twenty years ago that it would be like literally nothing on the internet. You couldn't even google it.

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 someone else try to figure this out, you know, if they were going to do what they would have done already. So we really we really kind of rallied our community. Our community was all help asking how can we help?

How can we help? So we're like, you know what, let's do something about this.

So that's when we decided, you know, three or four months after their diagnoses, that we were going to form a foundation. We were going to start raising some money, we were going to start raising awareness, and we were going to try to really.

Make a change.

How weird is this MS that they have?

So it must do a districtee. It's ultra rare.

So it's like less than five hundred in the United States, which is considered an ultraware disease.

The numbers worldwide, don't cut off.

What's that, I'm sorry say?

The numbers worldwide are the same too, like ultraware at all continents.

You know, when you think about MS, one name comes to mind, right, Labor Day weekend, Lewis, Yes, and we grew up at that. I grew up with that on TV, like we all grew up with that watching that two three days of raising money and yep, and who took.

His was so I don't think they do it. They don't do a telethon anymore.

But that was the original fundraising for the Muscular Dystrophe Association. And they, you know, they have made They've really changed the landscape in this whole area, like supporting research, finding finding treatments for it. The thing about muscular dystrophe is that there are over like forty some types. Our type is a rare form called limb gird or muscular dystrophe. So it's not the main one that like most or the more. It's not the most common one, the second most common one.

Do me a favorite. Just hold that, thoughtful woman. We just got to go off to break I'm sitting stump when he listens to Tough as Nails on WB's you will be right back and welcome back to the Toughest Nails. I'm Cindy STUMPO. When you're in the studio tonight with who, Samantha and Courtney. Okay, Courtney, pick up where we left off. Go ahead, I'll stopped you.

Well, 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.

Is that helping Is that helping children? I'm sorry, is that helping your children right now?

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.

Why we founded exactly So that is why we founded the Dean Foundation for Children with Great Diseases because seriously, this is an unders served community, diere unmet needs. Do these kids there are children, it's a pediatric disease. So these children are just sitting there waiting for a care.

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 something about it.

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?

I know, I know, it's like that's the thing. It's me and my husband kind of you know, it's tough. We're both under monumental stress. But at the end of the day, only he knows what I'm going through and vice for ourself. Only I know what he's going through. And I'm incredibly close with my family. I'm incredibly close with my sisters. He's incredibly close with his family, But like, at the end of the day, only he and.

I know what this pain feels like.

So while I never wanted to go into business with him or work with him in any capacity at all, you know, husband and wife.

That's a I don't want to work with you.

Working together on the foundation is definitely a little bit of a challenge.

Because it's like, Okay, you do this, I do that. But at the end of the day, he.

And I were in this together and only us, only he and I are going to fight for those kids.

You know, we can't, we will will. Both of us would give our lives for them.

So having that bond has definitely brought us closer together in the past two years.

And then you have a third child that's very healthy.

Yes, he's a good middle So my oldest, Yes, my oldest is.

A boy, and my youngest is a girl. And my son Luke in the middle is healthy.

And Luke what does he think about everything that's going on with the older and the younger? Does he? How old is Luke?

Luke is ten right now. He's he's such a good boy. You know, he's such a good helper.

He helps my son all the time, like always look it up for him, like, will help pick him up if he needs to.

And he's such a trooper. 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 totally change our whole lives.

And he is just.

He's adapted so well, he's coping so well. He's just such a good boy. And I know this is going to be hard for him. Have you know, poor middle child already he's already a middle child.

Yeah, but he's the many 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 with my friends. Okay, this is like, you know, I'm going to have fun. But I guess, you know, he sees that he's only known this life right because his oldest sibling had it than he is younger. Does he have to ask you, you, mommy, how come I didn't get this at a young age or anything? Or no?

Yeah, so so definitely all three of them have asked why you know, why?

Why me? And why not live? 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 worrying and stuff. And of course the severity of this illness is.

Incredibly scary to chair share with children, but so we share like what they development developmentally can can handle at the time. But we try to be very transparent with them.

Now, how do you get the two around their wheelchairs? Their wheel chairs?

Not yet, not yet, 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 symptoms, it gets worse and worse and worse because it's basically you're born with healthy muscle and then the muscles when they are under stress, they just get damaged. So every day is just more muscle damage and your body can't repair it. So basically it's just progressive. It's a progressive illness as the years belong.

But what they don't know where they don't know much about it. How can they determine, say, well, by fourteen they'll be at this age and by fifty, well it's so weird.

It is rare, but there it is.

You know, there are patients with it, so they have they kind of have like a what they call a phenotype kind of mapped out and it's it's pretty similar to tudish and muscular dystrophe, which is like the one that the more common one that.

Most boys have. So they kind of matter up.

But it is hard to study because this does have a lot of variability to it. So some kids might you know, lose their ability to walk at thirteen.

Some kids might walk till twenty.

It's hard to just don't know.

Yeah, it's hard to tell.

So are the signs different than boys versus girls question?

Yeah, a little bit. I would say.

My daughter's biggest symptom that we knew we had to test her with was she was toe walker. And you know, she's done valations she was like two, so that's always been like her. She's very dainty and box on her toes.

And a lot of kids walk on the toes too, it's not like that uncommon, so with.

You quit everything.

Those toes.

So I probably wouldn't have checked her if she was my first you know, I wouldn't have checked her if her just that. But my son at around like nine, So what problemted me to test him was around nine years old.

Like we were out.

All summer together and it was like, you know, they

If you don't mind me asking Queney, what did Joe do pryor like, he spends a lot of time on this organization. And when you guys married and whatever before had children. What was his job his full time job or is it still his full time job?

It still is his full time job. So he is a fourth generation.

Wine and liquor retailler, So his family business has been a They have five package stores in the Metro West area of Boston, So he's still he's still runs clothes. He's he's very busy with that, of course, and he stays active with that.

And the kids they go to school. They're not homeschools to go to school, but you're traveling a lot for different what doctor's here exactly?

Yeah, doctors care?

And then just foundation work too, like there's a lot of advocacy work that needs to be done.

Is the company, Quinny, how hard is it to raise money for this?

It's really I don't know if you've ever fundraised or.

Anything, many many, many and too thirty something years of my life. Yes, and the thing you hate most is asking people for money, right, It's like, uh.

I know, and you know, we're so lucky.

Our community has really rallied like right off, right out the gate. Our community was so you know, jumped right on board to help.

We had when you read your community event, when you say community, which community, what part of Austin so our local community.

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 family is we we know a lot of people.

I guess I don't know.

Boston thing, Newton Cohasset, Boston, Newton Co has it at least for a reason that you can raise money, right, But it gets to a point where you kind of start going, oh God, can I call that person again? Can I call this person again?

Exactly?

It's not like you're asking for you You're asking for the spun that you have. You have enough money for your own children. It's not what it's about. It's about helping people that don't have the money to get the resources they need for their children. Right, So it's trust me.

I know, it's not like that's what That's what I try to say too.

I'm like, it's not a good com me at all, you know, it's we want to make a change in this landscape. We want to make a change for this community. This community's been sitting here waiting for a treatment.

Okay, hold that thought. We're going right out to break. I'm sending stumbointing you listen to the Toughest Nails on WBZ and we'll be right back. And welcome back to Toughest Nails on WBZ News Radio ten thirty. And I'm Sindy and I'm here with my daughter.

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. Mike, that's the worst. Usually Samantha's over the year, like way across from me, which is really good.

Right now.

They're great. They're great. I can't think you're going on all right, but they can they take the glee away something.

Yes, I know they're great though.

I like them. They have a glear and I can see the mean. I put my contact lenses, I can't see right, but I can see far away. I take them off now and I can see close still right. Welcome to getting older. That's such a wonderful thing. Here's my question. I'm sure you've met many children, right obviously, and I and because of the hippo law, I'm not asking you to discuss that. My question to you is, have your children got to meet other kids that have exactly their disease they have?

Yeah, and that has been so impactful. You know, you see these kids going through the same thing that your children are going through.

And for my children to see that they're.

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, 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.

For children more all these beautiful children that we've met.

Okay, so do any of these other parents help you guys that have these that their children have these diseases. Well, you guys doing all the heath lifting, so I mean.

The heavy lifting is definitely us.

But the some of the parents have found ways to kind of help contribute, you know, with their local communities, kind of contribute to the Deom Foundation. And then there are other families that there's a family that has.

Foundation as well too.

So they kind of did a lot of work ten years ago. So they've been a huge kind of leader for us. You know, we've kind of learned and leveraged what had worked for them and kind of gone off their advice and stuff. And they've given us such amazing advice for our kids too. So kind of things that we can kind of share along our community when we meet new patients. Patients are reaching out via our social media channels every day.

Now, okay, now, truth and honesty. How many times have you like just want to run your head through a wall, go why us? And why why? Yes? And why does this happen to us? And have that feel bad moment and then take yourself out and bring yourself back to reality. How many times have you had a dot?

Right?

I mean, of course, I think deep down daily, right, Like?

But cool, glad, I'm sorry.

I yeah, I think deep down daily. I have that. But also I have I have a lot of faith. You know.

I think that there is a bigger plan for everything, and I feel like I was given these children for a reason. I think that I was also given the tools to kind of go and bang down some doors and find a way to make a change. You know, me and my husband were both very relentless. We're both very stubborn, which in this sense has really kind of 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.

Want to drive.

I hate to tell you, but that's a Boston thing. Okay. We don't like the word now. We hate the word tomorrow.

Right.

So if you're your Tanasi's there and your grass, I don't like the word tomorrow business. No, No, we're gonna get done today right tomorrow night exactly. So as long as you keep you're just like an excavator. I call you an excavator. You just keep going through walls. You don't care. You're just going to keep going through and keep going.

And you know who's gonna fight for your kids?

Like Noah, No, only the mother and father. That's it. You can be married, he could be married to somebody else, but no one's gonna love your kids the way you love your kids. And that's really the truth. Whether you know, we can love other people's kids, but just is your kids, right, So yeah, who said being a mom was easy? Never 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

I mean, yeah, well we do have to go separate from the kids for like some some foundation work, so we use that time to like, really, it's really nice just by ourselves.

We had the chance to talk because at home we give our attention to the kids. Of course, we have three kids, two dogs, a cat. Like it's a little crazy, so we use that.

We have dogs and cats. There too, Yeah, throw it in the mix. Okay, how much more stress do you want? Hold on? We have the pedatrician, were the uh vets and cats flying around the house. Yeah, sounds like a lot of anxiety to me. I'd rather go to work.

With.

So it helps when you come from a big family, that it does. I'm just sitting here watching you. You're beautiful, absolutely absolutely stunning, beautiful.

You really and yeah she smiles.

She does smile, which like when she when she you do light up when you smile. But you also see the pain behind those eyes. But that's me. I can see both. I see the glassy eyes and I see the pain behind the eyes, right, which I don't know a mother that wouldn't feel that way. But right, how hard is it? I was going to wait till after our next break, but we can go into this a bit. How hard you find Well, let me let me take

But so that's kind of our approach.

We have a great team on the foundation and my husband coming from a business background, he that's his model.

You got to spend money to make money. So he's good with that.

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 and it's been you know, four hundre people showed up.

It's been amazing. It's been a huge turnout. That what is that because like a walk.

Run that was great because it really catered to families and like families could come show up, kids could come show up, So it was.

Great to have kids there.

This important children with disabilities, you know, and it's really great because it kind of extends back like inclusivity. Kids are kids are so understanding when they kind of know what's going on, so they're like, hey, you know, I know someone who walks a little funny like I'll come support them great. So that was a really great way to number one, raise awareness and of course fun raise.

So we're kind of just trying to hit different crowds if.

You can kind of catch where we're going with at I do want one once for families. One's more for you know, the guys who want to come help. We have a ton of industry partners, We have a ton of you know, Joe knows a lot of successful businessmen.

So like that's where they want to come and have fun. They want to come have fun, they want to come.

Want like golf, right, so tell them they can golf and drink. And I just bought it. I can't tell me how many rounds I have to buy. Just a nearly foundation, another fifth big foundation that you know in Boston, Cindy. We need six thousand dollars. I never played a game of golf my life. Okay, I've never been chased the god. One time. I think I was throwing the golf both

Yeah, And then I just just last month we had it Austin. It was so fun. We had it. It was like full found amazing.

We had a casino cruise on the Spirit of Boston in Boston Harbor. So we had like a casino company come in so people came on the boat, their tippet got down like all their chips and stuff like that, so really big had to buy the ticket to come on.

And we had like cocktail attires. So it was super fun.

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.

So I think that that will be like definitely an inaugural I mean a yearly thing for.

Us, because people just had a last and everyone's like next year more time.

We need more time also too. For the past two 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 motto is run for those who can't, because my daughter says, like, one day I want to run the marathon, and you know, that's a dream, that's something that these kids, that's something.

That they can have some day if we can make a change.

You know, gay, let's hold that thought from it. We're going out to break. I'm Cindy Stumpo and you listen to Toughest Nails on WVZ and I'm with Sammy and I'm with Courtney. Will be right back and welcome back to Toughest Nails. And I'm Cindy Stumpo and I'm here with Samantha and I'm here with Courtney. And of course the best conversations always happened. We would go to commercial and I asked Courtney what she was, and of course she says, she's a cancer, right, and I'm a cancer.

What are there?

My son's a Libra, which she said total Libra, and he's like he's just like a dream boy, you know, they.

Don't want to fight. Go ahead.

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.

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.

So it's warman affection. Yeah, warm affection. But you you know you you are a very warm person for sure, and you'll do for the world. But men, when you had enough, you had enough to there's a breaking point for you too. But then we're over it in five minutes and like it never even happened. Isn't that crazy? Like you can blast off of five minutes and put it right back in and you're over it and you're like,

She's aces and oh my god, she is like I'll just I'll trust today and so sweet, so kind, like she the girl drama and she's nine too, so I'm like, oh my god, girl very it starts, yeah, the girl drama. That's so funny, like like honestly, I'm like, wow, Actually, God knew what he was.

Doing, given me only one because this has had like that dollars ship.

You should understand her more than anybody because you're auto sensive, but she just takes to a whole other level without the but you're out of sensive, but you get somewhat of a backbone the just like, well, now.

I know why her middle is the way he is.

He's Leo.

So he's very decisive compared to the other two.

Is he very decisive? Yeah? Yeah, he's a sign fire.

He takes fair business like he's just like you know.

So tell us, how can my listeners help you? How can the stumpos help you? Coney and lay it on thick? Okay, because sometimes people are very cheap, right, they need to dig in and I always say this, I don't care if you give five dollars or you give a thousand dollars, you have five hundred dollars, you give a dollar, I don't care. It's it's a it's a cup of stuff, Bucks, coffee or Donkeys. Right, I'm a donkey, she's a Donkey's. You have both donkeys, but of course my son's a

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.

Even five dollars helps.

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.

Okay, let's all do this together, folks. If you listen home, you know we still have to you found it? Can you find on my phone? You're very fast on this stuff. That's why we have, by the way for technology absolutely. So just you have your phone. I'm not I can't see you from over he hold on, say you're in the way. Okay, thank you. I just want to see where phone is. Okay. So what you do is you tag Sydney stumple Builder and then I can share the story.

Sydney s y why stump Builder. I got it? Beare five check follow?

Okay, I will, I will share you, I will post. I will post a story and share it and I'll tag you in the you can repost so and then obviously the d on www dot the d on fund dot org, but that you can find.

It on Instagram.

Okay. What's so? We just you know, what's the mission for this year? Like how much money you guys are going to raise?

So we didn't really touch on it, 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 musculidystrophe. We have committed to one point two million dollars to.

Fund their deployment of their clinical trial in the United States so it would be available for the United States patients, which would be the first ever ever for this illness. So we this over the past two years.

We are incredibly close to our goal of one point two million dollars since our since our founding, and then obviously that's just step one. You know, we want to help advance this clinical trial to further more patients. We want to.

Support this company because they're the only ones working on this, and we really want to kind of change the future for this these forms of muscula district and then also other forms of muscular district who are sitting and waiting for cures too.

So you know, this is really just the beginning for us.

How far they've come with MS in the last fifty years.

Yeah, so huge question since the was it Johnny person or who.

Is it Jerry Lewis?

Since the telethon Jerry Lewis?

Since the telethon, now the MDA has supported research. Now as of last year, there is a FDA approved gene therapy treatment for children with duche muscular districte. So, like I mentioned earlier, that's the number one most common gene 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

They have a client that's been main main head resource. Uh we not rear, thank you guy all over the world is one of my clients. I don't know if you've ever heard of him. Have you ever heard of VJ? No, it's a meeting that maybe I'd like to set up for you guys.

Yeah, that would be amazing.

So VJ is a Brighams guy, but he's always traveling all over the world, you know, teaching.

Wow.

But again scientists then.

HM neologist is not that I can pronounce that immunology.

He's an immunologist 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. Actually, Okay, And that's kind of you know, Cindy, that's kind of something that we've done since since our diagnoses two and a half years ago.

We anyone who says, okay, I go give me the number. We called, were banging down doors, type can you help us? Like we are calling.

We've been calling in favors. People give us a number. We called them, We set up meetings, We like, how can we help them?

You might feel lucky day because I'm in the middle of another build out for him and for the family, Like this is the third house, Okay, third perfect, this is for the daughter. But let's talk about ms Honors Wikipedia.

So he's the.

Director of Evergrand Center for Immuniologic Diseases at Harvard Medical School and bring a women's hospital, and then he's known for neuroscience and cancer like autoimmunity, immune therapy. He's best known for discovery the goat, the coat inhibitor molecule t I M DASH three and the TIM family of genes in the subset of immune cells called th H seventeen cells. I don't know what any of that means.

Okay, she has read a bunch of stuff. I don't even know what we can talk about.

Two, don't worry.

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.

You know so perfect.

So what we have that coming up right now for what's your next event? That if people want to jump on and your pockets and give money, I'm telling people, go in your pockets and give money stuff being cheap. Go ahead.

Yeah, they in the fall would be a muscle for the muscle five k.

But you know, we do have a marathon runners right now if anyone.

Is inclined to support them, and of course on the same donations on the d on fund dot org.

Okay, L D I O N. Well you'll say that we come back, we're going to break. Okay, we got to go to commercials. That's what pays for our show. Okay, you're listening to city STAFFO and on toughest Nails on w BZ. We'll be right back and welcome back to Toughest Nails on WBZ. Courtney.

How do people get in touch with you?

Yeah, Courtney in Boston, stay with your boss. It's okay, you can use your boss accent.

Yeah. So you can check out our website www dot d on fund dot org.

Also try out again. People need to hear that www dot d on.

Fund dot org.

All right, and then at the don 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.

All right, Courtney. We welcome you come back a time and we can talk about the same time. Loves having you in the in the studio next night and we will be making donations to the Stumpo Women. Okay, everybody, have a great, safe weekend and we'll see you next week. This is City Stumpo Top his Nails on WBZ News Radio ten thirty