The Dion Foundation

The Dion Foundation OUR CHILDREN. OUR CAUSE. OUR FIGHT. Raising awareness for LGMD2C, a rare, muscle wasting disease.

Mike, Will and Christina thank you running for those who can’t and raising over $23k!! You did it! Because of people lik...
04/25/2026

Mike, Will and Christina thank you running for those who can’t and raising over $23k!! You did it!

Because of people like you, we are getting closer to getting more kids the gene therapy they desperately need. Your commitment and dedication keep us moving forward

THANK YOU!! 🩵

Everyone, this is Mike!  He is running the marathon tomorrow on TEAM DION. And he’s so close to reaching his goal.  Mike...
04/20/2026

Everyone, this is Mike! He is running the marathon tomorrow on TEAM DION. And he’s so close to reaching his goal. Mike has raised $9,428, just $572 away from his $10,000 goal.

Fun fact: If 22 people donate $26.20, he’ll get there!

Tomorrow is the Boston Marathon.
Every mile he runs is for kids with LGMD2C and the fight to fund the next round of clinical trials.

Let’s get him across the finish line — before he even starts!!

GO MIKE!

https://www.givengain.com/project/michael-raising-funds-for-dion-foundation-for-children-with-rare-disease-116992?utm_source=ig&utm_medium=social&utm_content=link_in_bio

Everyone, meet Will Will is running on TEAM DIONS 2026 Boston Marathon team and he’s already 72% of the way to his $10,0...
04/09/2026

Everyone, meet Will

Will is running on TEAM DIONS 2026 Boston Marathon team and he’s already 72% of the way to his $10,000 goal… but he’s not done yet. Let’s push him past it.

In just 22 days, he’ll be running the Boston Marathon, not just for the finish line, but for children living with muscular dystrophy. He’s running for those who can’t.

Every dollar raised goes directly toward getting more children into clinical trials - something that is truly life-changing and life-saving. Our goal at the Dion Foundation is to get more kids the treatment they desperately need but we need funding to be able to do it. Wills marathon fundraising goes directly towards that

Let’s rally behind Will and help him finish this strong!

If you’ve been thinking about donating, now is the time. 🩵

SUPPORT HIM HERE:
https://www.givengain.com/project/william-raising-funds-for-dion-foundation-for-children-with-rare-disease-117129

Most people will never have to think this way. But for a child living with LGMD2C, these thoughts are constant. Their th...
04/07/2026

Most people will never have to think this way. But for a child living with LGMD2C, these thoughts are constant.

Their thoughts are made up of things we take for granted: 
getting up off the ground, walking up some steps, keeping up with friends - aren’t simple for kids with MD.

They’re calculated. They’re exhausting. They’re uncertain.

And behind every one of these thoughts is a child just trying to live their life and keep up with childhood.

This is why we don’t stop. This is why we’re here.

Huge shoutout to TEAM DION member Will for an incredible Boston Marathon fundraiser today! Before today even kicked off,...
03/21/2026

Huge shoutout to TEAM DION member Will for an incredible Boston Marathon fundraiser today!

Before today even kicked off, he had already raised over $5,500 (!!), and I know that number is only going up after tonight.

Because of people like and .bos and everyone who showed up to support him, we are able to continue our efforts to bring gene therapy closer to the families who are so desperately waiting. Everything we’ve accomplished at The Dion Foundation so far is because of people like you.

Will, we are so grateful for you! And to everyone who showed up, donated, and supported - thank you!! We truly could not do this without you 🩵

Thank you Will & Backyard Boston💪🏻 40 days out - LET’S GO!!!

For years, we have been fundraising for this exact moment. And praying for it, too.Today, Atamyo Therapeutics presents p...
03/09/2026

For years, we have been fundraising for this exact moment. And praying for it, too.

Today, Atamyo Therapeutics presents promising early results from the first patients treated with ATA-200 gene therapy for LGMD-R5 (LGMD-2C).

The early data is incredibly encouraging:
• Over 90% of muscle fibers expressing the missing SGCG protein
• Significant reductions in markers of muscle damage
• Encouraging improvements in functional testing

For a disease that causes progressive muscle weakness in childhood, results like this are something families have been hoping and praying for from the moment they hear their child’s diagnosis. We are beyond thrilled by these promising results and it truly feels like a miracle. There was a time where we never thought these incredible results were even possible.

This clinical trial, led by Dr. Barry Byrne at the University of Florida, is part of the research The Dion Foundation is helping advance, and it would not be possible without the incredible support of our community who continues to stand beside us in this fight.

To everyone who has supported our mission, donated, run races, attended events, shared our posts and believed in this fight, this progress belongs to you, too 🩵

Behind every breakthrough are families who refused to give up. For Peter. For Maggie. For every child still waiting.

Our mission. Your help.

Today we celebrate Maggie turning 10 🩷And fittingly, her birthday falls on International Women’s Day. A reminder that st...
03/08/2026

Today we celebrate Maggie turning 10 🩷

And fittingly, her birthday falls on International Women’s Day. A reminder that strength doesn’t come with an age requirement.

Maggie is brave.
An old soul.
A hype girl for everyone around her.

She’s a true pisces, an ocean girl, a dog lover, a proud cat mom and a music lover (especially oldies). She somehow always knows every lyric. She has great taste in clothes, food and travel destinations.

She loves her family and is the best big cousin. And she’s the kind of friend who feels things deeply and cheers the loudest for the people she loves.

But Maggie is also something more.
She is an advocate.
A leader.

A young girl already using her voice to help ALL kids living with rare diseases

Maggie lives with LGMD, but she refuses to let it define her. She shows up every day with courage, joy and the belief that her life has no limits.

On this International Women’s Day, Maggie reminds us that strength, empathy and leadership can shine at any age.

Happy 10th Birthday, Maggie D!!

We are sooo proud of you 💛

MEET MIKEWe are honored to have Michael Dreske running the Boston Marathon as a member of Team Dion.Mike is a Boston-are...
03/03/2026

MEET MIKE

We are honored to have Michael Dreske running the Boston Marathon as a member of Team Dion.

Mike is a Boston-area native who grew up in Melrose and now lives in Everett. Athletics have always been a central part of his life. From playing two-hand touch football at recess to competing in college baseball. Running the Boston Marathon has long been a personal goal, and he could not imagine pursuing it in support of a better cause.

Earlier in his career, Mike practiced as a nurse, where he saw firsthand the profound effect illness can have on children and families. After being introduced to The Dion Foundation through a family friend and learning about the mission, he immediately applied to join the marathon team. The foundation’s commitment to turning research into real progress deeply resonated with him. He believes children should not have to experience serious illness, especially when we have the tools, research, and innovation to pursue cures.

Mike is running so that children affected by rare neuromuscular diseases can grow up with fewer limitations and more possibilities.

Mike is already crushing his fundraising goals. But with Rare Disease Day just behind us, this is a meaningful opportunity to support our mission while also helping him reach his goal of $10,000. Every donation moves research forward and brings hope to the children and families who are desperately waiting for treatment.

If you feel able, please consider supporting Mike and Team Dion!

Link in stories 🩵

Today is Rare Disease Day.A rare disease is called “rare,” but to the families living it, it is every single day.It is n...
02/28/2026

Today is Rare Disease Day.

A rare disease is called “rare,” but to the families living it, it is every single day.

It is navigating a world you never thought your family would enter.
It is watching milestones differently.
It is seeing your child face obstacles no child should have to face.
It is balancing childhood with hospital visits, therapies, and uncertainty about the future.

But it is also strength, love, resilience and a community that refuses to accept “nothing can be done.”

At The Dion Foundation, we are working to fund real treatments for children living with limb-girdle muscular dystrophy. Research is no longer just hope. It is happening.

Awareness matters.
Funding matters.
Time matters.

Every share matters.
Every donation matters.
Every supporter matters.

Because children and families are still waiting.

Thank you everyone for playing! GOOD LUCK and go Pats!!! 🏈
02/05/2026

Thank you everyone for playing! GOOD LUCK and go Pats!!! 🏈

Address

560 Boylston St
Boston, MA
02116

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