My DMD Hero

From 2019 to 2025 My DMD Hero raised over $400,000 to provide life changing mobility equipment to DMD families.

My DMD Hero is no longer in operation as of summer 2025.

04/19/2025

💙 On this Good Friday—a day that reminds us of both sacrifice and hope—we’re sharing something deeply meaningful from our hearts.

Everything has a season, and the season for My DMD Hero has come to an end. After five powerful years, we are beginning the process of closing down My DMD Hero.

Thanks to you—our donors, sponsors, volunteers, and friends—we’ve raised over $419,000 since 2019. And by the time we finish this journey, we will have given away $341,290.67 directly to Duchenne families—over 81% of every dollar. This is something to be proud of!

We’ll be winding things down over the next couple of months as we complete a few final projects for families currently receiving support. Every dollar is going out with purpose, just like it always has.

From ramps to lifts, wheelchairs to pool lifts...—your support helped meet the needs of Duchenne families who needed it most.

We’ll share more in the days ahead. But today, we simply want to say:

Thank you. Together we made a difference.

If you have any questions please email [email protected]

03/31/2025

🧬 Duchenne Muscular Dystrophy (DMD) is an X-linked condition, meaning it’s passed down on the X chromosome.

👦 Why does this mostly affect boys?
Boys have one X chromosome (XY), so if their single X carries the dystrophin mutation, they develop DMD.

👧 What about girls?
Girls have two X chromosomes (XX), so if one carries the mutation, the other X often compensates. This means most girls are carriers rather than affected, though some may experience mild symptoms due to X-inactivation.

📢 Understanding DMD’s inheritance is key to awareness and early diagnosis. Share this to educate others!

🔗 Learn more about X-linked inheritance and DMD:
👉 https://www.mda.org/disease/duchenne-muscular-dystrophy
👉 https://www.ncbi.nlm.nih.gov/books/NBK1119/

03/29/2025

💙 Attention DMD Families! 💙

Are you in need of essential mobility or medical equipment for your child or loved one with Duchenne Muscular Dystrophy? The Hero AssistanceFund at My DMD Hero is here to help! 🦸‍♂️

🚀 We provide assistance for:
✔️ Power & manual wheelchairs
✔️ Scooters + Travel Wheelchairs
✔️ Ramps & lifts (stairlifts, Hoyer lifts, pool lifts)
✔️ Standers & adaptive equipment
✔️ Smart technology for independence

✨ How It Works:
🔹 Apply online – it’s quick & easy!
🔹 Our team will work with you to find the best solutions.
🔹 We partner with vendors & fundraisers to make equipment more accessible.

🔗 Apply Now
https://www.mydmdhero.com/herofund

03/24/2025

🗣 One Duchenne parent was told, “Your son looks like he’s going to play football. Look at those calves!”

At first glance, young boys with Duchenne Muscular Dystrophy (DMD) may appear to have strong, muscular calves, but this is actually due to a condition called pseudohypertrophy—where muscle tissue is gradually replaced by fat and scar tissue.

Instead of being a sign of strength, pseudohypertrophy is one of the early indicators of DMD, as the body tries to compensate for muscle loss. Over time, muscle function declines, making walking and movement more difficult.

Understanding these hidden signs of Duchenne can lead to earlier diagnosis and better care.

📢 Help us spread awareness—share this post!

🔗Read More: https://www.ncbi.nlm.nih.gov/books/NBK482346/

03/17/2025

🔬 Have you ever wondered why Duchenne Muscular Dystrophy (DMD) is called “Duchenne”?

The condition was first described in the 1860s by French neurologist Guillaume Duchenne, a pioneer in the study of neuromuscular diseases. Using electrical stimulation, he identified and documented 13 boys with a distinct pattern of progressive muscle weakness. His research laid the foundation for understanding muscular dystrophies, a term that was not widely recognized before his work.

Because of his groundbreaking contributions, this most common and severe form of muscular dystrophy was later named Duchenne Muscular Dystrophy (DMD) in his honor. Today, his discoveries continue to influence research, bringing us closer to better treatments and, one day, a cure.

📢 The more we know, the stronger our fight against DMD! Help spread awareness by sharing this post.

🔗 Learn more about Duchenne Muscular Dystrophy here:
👉 https://www.mda.org/disease/duchenne-muscular-dystrophy; https://pubmed.ncbi.nlm.nih.gov/16225184/

03/07/2025

🌟 Today's Question!🌟

👉 What hobbies does your child with Duchenne love to participate in? 👈

As a DMD parent we want nothing more than to see the joy in our kid's eyes when they are doing what they love. What is it that lights up your kid? What video game, sport, hobby, or whatever are they in to? Share it here and give some other parents ideas! Maybe even find a friend for your son to enjoy a hobby with! Ready. Set. Go!

📸 Post a photo!
🔗 Share a link!
💬 Tell your story!

As DMD parents, we need to stick together and support each other! 🙌 Over the next few weeks, we’ll be posting a series of questions inviting you—our amazing DMD PROS (the parents) —to share your best ideas on various topics that impact the quality of life for families with Duchenne-affected children. 💪✨

Thank you in advance for being so awesome! 🙏 We can’t wait to hear from you! 😊

03/03/2025

👧 Did you know? Duchenne Muscular Dystrophy (DMD) is often thought to only affect boys, but girls can be affected too, though it’s much rarer.

Most girls are carriers of the DMD gene, meaning they inherit a mutated X chromosome from their mother. Since girls have two X chromosomes, the healthy X typically compensates for the mutated one, so girls usually don’t show the full symptoms of DMD. However, in some cases, girls can have mild symptoms due to X-inactivation, where the healthy X doesn’t fully compensate.

But in very rare cases, girls can inherit the mutated gene from both parents, resulting in them having the full condition of Duchenne. These girls can experience the same muscle weakness and challenges as boys with DMD.

Understanding that girls can be carriers and, in rare cases, affected by DMD is important for raising awareness and providing support to every member of the DMD community.

➡️ Share this to help others understand that Duchenne affects both boys and girls, though in different ways.

02/28/2025

🌟 Today's Question!🌟

👉 When it comes to clinical trials, what advice have you found most helpful? 👈

We know that finding, traveling to, and navigating clinical trials is a burden and a blessing. What has your experience been? What tips can you give another family about getting into a trial? Is the process hard, easy? What about knowing when to leave a trial? Please jump in and share your opinion and experience!

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As DMD parents, we need to stick together and support each other! 🙌 Over the next few weeks, we’ll be posting a series of questions inviting you—our amazing DMD PROS (the parents) —to share your best ideas on various topics that impact the quality of life for families with Duchenne-affected children. 💪✨

Thank you in advance for being so awesome! 🙏 We can’t wait to hear from you! 😊

02/27/2025

🚨 LIMITED-TIME ALERT! 🚨

Introducing our exclusive "Never Give Up" Hoodie—revealed at Friends and Family Night and available ONLY until February 28!

This isn’t just a hoodie—it’s a statement of strength, resilience, and hope for kids battling Duchenne Muscular Dystrophy. 💪🦸‍♂️

Every purchase helps provide life-changing mobility equipment for these incredible warriors. When you wear this hoodie, you’re not just supporting the cause—you’re becoming a hero.

🛒 Grab yours before it’s gone! ➡️ [https://www.bonfire.com/mydmdhero/]

02/24/2025

🔬 Did you know? About 1/3 of Duchenne Muscular Dystrophy (DMD) cases are caused by spontaneous mutations? That means the mutation occurs without any family history of the disease.

In DMD, a genetic mutation in the dystrophin gene causes muscles to weaken over time. Most cases are inherited from a mother who carries the mutated gene on her X chromosome. However, in 1/3 of cases, there is no prior family history, and the mutation happens for the first time in the affected child. This is called a de novo mutation—a spontaneous genetic change that occurs in the egg or s***m, or early in fetal development.

Can you get DMD from someone else? ❓
No, DMD is not contagious. It’s a genetic disorder, which means it is inherited or occurs due to a random mutation. A child cannot “catch” DMD from another person, and it doesn’t develop from environmental factors or lifestyle choices.

Understanding how DMD happens is a step toward better awareness and support for families who may be facing this diagnosis, whether or not there’s a family history.

➡️ Share this to help spread awareness and educate others about DMD!

Address

Columbus, OH

Telephone

+16143750402

Website

http://www.mydmdhero.com/

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