Muscular Dystrophy Association

Yeah.

Remember the MDA muscular dystrophy telethon every labor day, every labor day.

Do they still do that? No.

I knew they did that a couple of years after, uh, Jerry, I guess that there was something happened there and Jerry was no longer doing it.

And so I think there are ways to get connected to an expert.

So I think the Muscular Dystrophy Association in the U.S. is a great way to find a specialist.

And then there's the Speak Foundation also has new LGMD centers of excellence that they're establishing.

And so I would say, try to get connected to an expert who understands what you're dealing with and has, you know, has knowledge of the disease.

She helped grow Race for the Cure and More Than Pink walk series into a top 30 peer-to-peer program nationally.

You see where I'm getting this royalty information from y'all? But before that, earlier in her career, she served as an executive director of the Muscular Dystrophy Association and the March of Dimes Foundation, all these organizations that are all about powering everyday people to get involved into their mission.

So she holds a master's degree in nonprofit management and a bachelor's in health service administration, both from the University of Central Florida.

Joining us from Atlanta today, Victoria, it is an honor to have you in our house.

now opening the door to better understand how diseases like spinal muscular atrophy and ALS manifest.

In a statement, the Muscular Dystrophy Association said it's encouraged by this research, adding, while this work is an early research advance and does not represent a treatment for SMA or ALS, new laboratory models such as these can provide valuable tools for accelerating discovery and deepening our understanding of disease mechanisms.

we can start to really understand how diseases affect these discrete populations.

In San Francisco, Luz Peña, ABC7 Eyewitness News.

discovery now opening the door to better understand how diseases like spinal muscular atrophy and ALS manifest.

In a statement, the Muscular Dystrophy Association said it's encouraged by this research, adding, while this work is an early research advance and does not represent a treatment for SMA or ALS, new laboratory models such as these can provide valuable tools for accelerating discovery and deepening our understanding of disease mechanisms.

we can start to really understand how diseases affect these discrete populations.

In San Francisco, Luz Peña, ABC7 Eyewitness News.

You know, we've done it for years here in Texarkana, Arkansas.

years and covid kind of hit and things kind of just got weird you know it just things got different and uh so we kind of stopped through there and um what it is is uh all the money that we're raising uh is going towards mda which is a muscular dystrophy association and uh there's a long history about that how it got man i

remember no i'm just i'm i'm where's johnny while he's out of here i'll tell you i'm old enough to remember you know the jerry lewis telethons and Fill the boot was a big thing, and I remember when we had the TV station over on Summer Hill and College right there.

Yes, sir.

And he approached one of the firefighters he knew about possibly doing a fundraiser to help raise money for wheelchairs for them.

Well, they got together, about 20 of them, and I think they raised about $5,000 back in 1954.

And so, long story short, eventually they partnered with MDA, which is the Muscular Dystrophy Association.

And that's been an ongoing partnership for going on 72 years.

By the time this episode comes out, I will have spoken at Charlie's More Than Muscle LGMD fundraiser, the first one.

I'm really excited about it and I'm sure there'll be lots of content on social media that I will have posted throughout the night but I love being a part of different fundraisers and events just raising awareness and money for LDMD charities all across the UK but I'm also going to be working with the muscular dystrophy association which is the mda in america um working on some exciting content for lgmd awareness day so keep your eyes peeled on mine and their social media for it i was also recently asked to host an ask me anything forum on the muscular dystrophy news website and i have worked with them for a couple of videos now and Being able to host this forum has been so, so special.

I've been able to share my story and answer some really, really deep, insightful, incredible questions about life with muscular dystrophy.

So it's been really nice to meet people on that forum and get to know them and to chat away about all things MD.

Like anybody you could think of, like some, you know, lounge lizard from like 40 years ago is there next to like a washed up opera singer.

And then Captain Lou Albano literally sitting in the middle of them talking about, you know, the Muscular Dystrophy Association fundraisers and stuff.

So he was the kind of guy, like he knew everybody in show business.

He knew every, especially in New York and his office was like that.