40 Muscular Dystrophy YouTubers in 2025

Oluchi Sonia Okwenna aka Queenideas

Youtube Channel https://www.youtube.com/channel/UCicgo2A_f.. Play
Hi, I'm Oluchi Sonia Okwenna aka Queenideas, a Social Media and Content Specialist, the founder and host for the Show, With Queenideas, the CEO of Snapdragon Consulting Ltd, and an aspiring Tedx Speaker living with physical disabilities as a result of Muscular Dystrophy.Here, I share my life above Muscular Dystrophy, my Social Media and Digital Marketing Expertise/Experience running my Company/Brand from home and my Show, With Queenideas.I'm on a mission to help young striving Nigerian Girls who are internet savvy make money and progress using their Talent and Social Media so that...MORE YouTube Subscribers 136KType Macro Since May 2016 Follow Get Email Contact

MDA

Youtube Channel https://www.youtube.com/channel/UC3pOGQt9V.. Play
About Muscular Dystrophy AssociationMuscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow us on social media @MDAorgMORE Email ****@mdausa.org
YouTube Subscribers 21.8KType Micro Since Feb 2007 Follow Get Email Contact

Wonder Girl Carmela

Youtube Channel https://www.youtube.com/channel/UCppm67Z5s.. Play
Carmela has a very rare progressive muscle wasting condition called LMNA-Congenital Muscular Dystrophy but refuses to let it stop her fighting to stay mobile and live a long life. With pure grit, determination and the help of specialist equipment and mobility aids, she strives to succeed and achieve goals she sets herself and remains positive through the tough times with her 'Can Do' Attitude. Carmela loves to help others using her great coaching skills teaching others like her to fight to stay strong and fit and appreciates she has to work harder than others to achieve so likes to...MORE Email ****@yahoo.co.uk
YouTube Subscribers 21.5KType Micro Since Jan 2016 Follow Get Email Contact

Parent Project Muscular Dystrophy

Youtube Channel https://www.youtube.com/channel/UC1YVq-XQ8.. Play
Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States focused entirely on Duchenne muscular dystrophy.We take a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. Only this comprehensive approach will lead to the day that 100% of those diagnosed can turn to a treatment that will lead to the end of Duchenne muscular dystrophy.MORE YouTube Subscribers 8KType Nano Since Aug 2007 Follow Get Email Contact

FSHD Society

Youtube Channel https://www.youtube.com/channel/UC65iLV9bH.. Play
Our PromiseAs long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSHD Society will keep working to accelerate research leading to treatments by 2025 and eventually a cure.Our Vision: A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)Our Mission: Find treatments and a cure for FSHD while empowering our familiesOur Core Values: Research | Community | UrgencyThe FSHD Society is the world's largest research-focused patient organization for facioscapulohumeral...MORE YouTube Subscribers 3.4KType Nano Since Oct 2008 Follow Get Email Contact

CureDuchenneMD

Youtube Channel https://www.youtube.com/channel/UCHprXg31x.. Play
CureDuchenne is a national nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy. Duchenne is a progressive muscle-wasting disease that impacts 1 in 3,500 boys. Boys are usually diagnosed before age 5, in a wheelchair by 12 and most don't survive their mid-20s. Currently, there are no approved treatments or cure for Duchenne. CureDuchenne funds promising research to find a cure for Duchenne. For more information, visit www.CureDuchenne.orgMORE Email ****@cureduchenne.org
YouTube Subscribers 3.1KType Nano Since Oct 2009 Follow Get Email Contact

Muscular Dystrophy UK

Youtube Channel https://www.youtube.com/channel/UCfKwJqJwC.. Play
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions.Founded in 1959, we have been leading the fight against muscle-wasting conditions since then.We bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults in the UK.MORE Email ****@musculardystrophyuk.org
YouTube Subscribers 2.9KType Nano Since Oct 2007 Follow Get Email Contact

Myotonic Dystrophy Foundation

Youtube Channel https://www.youtube.com/channel/UC_Ld_r56b.. Play
The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, the Myotonic Dystrophy Foundation is often the only resource they are able to locate, and MDF has provided assistance and support for people living with DM in more than 80 countries around the world.MDF is a non-profit, 501(c)(3) organization based in Oakland,...MORE YouTube Subscribers 1.7KType Nano Since Oct 2013 Follow Get Email Contact

CureCMD

Youtube Channel https://www.youtube.com/channel/UCf_IU2P5J.. Play
Cure CMD is your one-stop Congenital Musclar Dystrophy information resource. It offers perspectives from both passionate individuals like you and resarchers and clinicians who are at the forefront of CMD research. Cure CMD began as a group of families and loved ones dedicated to raising funds and pushing for much needed research in this under served area of neuromuscular disroders. Since 2008, we have built the foundation necessary to eliminate roadblocks to treatments for CMD. Though no therapies or cures currently exist for congenital muscular dystrophy we are closer to finding...MORE Email ****@curecmd.org
YouTube Subscribers 2.8KType Nano Since Mar 2009 Follow Get Email Contact

MDC / DMC

Youtube Channel https://www.youtube.com/channel/UCdngTP6gx.. Play
Muscular Dystrophy Canada's mission is to enhance the lives of those affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research.MORE Email ****@muscle.ca
YouTube Subscribers 1.4KType Nano Since Aug 2009 Follow Get Email Contact

James Parkin - living life, DMD style!!

Youtube Channel https://www.youtube.com/channel/UCPUlsJDVF.. Play
Hi my name is James Parkin, i am 29 years old and i have Duchenne Muscular Dystrophy (DMD)Duchenne Muscular Dystrophy is a muscle wasting condition, so over a period of time my muscles weaken over time. It is 100% fatal with no cure. The average life expectancy is about mid 20's. I started walking late. I was always last in the egg and spoon race at school. I lost the ability to walk aged 10. Couldn't stand a bit later. Was introduced to a ventilator at 15 and two years later was wearing it all night every night. When I was 18 I lost Thomas. My brother. He was 16 and had exactly...MORE Email ****@gmail.com
YouTube Subscribers 1.2KType Nano Since Oct 2021 Follow Get Email Contact

PerseusYo

Youtube Channel https://www.youtube.com/channel/UCR3YVA00L.. Play
My name is Justin I am 28 and I have Duchenne Muscular Dystrophy (DMD) which is a genetic disorder characterized by progressive muscle degeneration and weakness. This means I cannot walk, lift my arms, or even straighten my legs anymore.I play games almost everyday because If I don't I feel like I am inactive in a way. Since I cannot really do much I think it is the best way to keep my mind active.Despite being disabled I push through and keep being as positive as I can and I never let the fact of me being disabled depress me or keep me down.previous sub goal50 ✔ (12/13/2013)100...MORE YouTube Subscribers 2.1KType Nano Since Sep 2013 Follow Get Email Contact

Muscular Dystrophy Awareness Challenge

Youtube Channel https://www.youtube.com/channel/UC7w2T4c-I.. Play
I'm Mike Riley from Cape Cod, MA and I have Duchenne Muscular Dystrophy. After being inspired by the ice bucket challenge, which has raised millions for ALS, I created my challenge to raise money/awareness for Muscular Dystrophy, which is a group of diseases that cause progressive weakness and loss of muscle mass. People who have my form of MD will eventually lose the use of their arms and legs and have trouble breathing and swallowing. It affects 1 in every 3,000 to 6,000 males born in the US every year. There is no cure.The challenge is very simple. All you have to do is put your feet...MORE Email ****@lgmd-info.org
YouTube Subscribers 581Type Nano Since Oct 2008 Follow Get Email Contact

DefeatDuchenne

Youtube Channel https://www.youtube.com/channel/UCWGtc9bzW.. Play
One in every 5,000 boys is born with Duchenne muscular dystrophy, the most common fatal form of muscular dystrophy. The disease is relentless. It slowly weakens the body's muscles, deteriorating function of vital organs and ultimately - shortens their life. Although there are medical treatments that may help slow its progression, there is currently no cure.Defeat Duchenne Canada is the country's only national charity dedicated to ending Duchenne muscular dystrophy. We have provided leadership in research, advocacy, and support since 1995. We'll continue until a cure is found to ensure...MORE YouTube Subscribers 463Type Nano Since Sep 2007 Follow Get Email Contact

FSHDGlobalResearch

Youtube Channel https://www.youtube.com/channel/UCkj98hvGl.. Play
The FSHD Global Research Foundation is an Australian not-for-profit organisation dedicated to finding a treatment and cure for Facioscapulohumeral Dystrophy (FSHD).The Foundation is currently funding a number of groundbreaking research projects around the world (with a particular encouragement of Australian based research) aimed at achieving these goals.FSHD is one of the most common forms of muscular dystrophy and genetic hereditary diseases seen in skeletal muscle. Its prevalence varies from country to country depending on medical diagnostic competence. A 2010 report by Orphanet entitled...MORE Email ****@fshdglobal.org
YouTube Subscribers 811Type Nano Since Sep 2012 Follow Get Email Contact

Jett Foundation

Youtube Channel https://www.youtube.com/channel/UCiHc_k0T8.. Play
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey.MORE Email ****@jettfoundation.org
YouTube Subscribers 243Type Nano Since Jun 2013 Follow Get Email Contact

The Muscle Help Foundation

Youtube Channel https://www.youtube.com/channel/UCp9h1Pyf3.. Play
Prepare to be inspired! We are a small multi-award winning, family-centred charity, working tirelessly, now delivering virtual experiences in the UK (as a direct result of COVID-19) called Muscle Dreams for children & young people (8-28yrs) with the muscle wasting disease, Muscular Dystrophy (MD).These moments-in-time change lives, they uplift, they give hope. Our social currency is underpinned by the idea that an empowering experience, if executed brilliantly, can be transformative for both a young person and his/her family. A small but mighty charity, that's raised over £1.1 million...MORE YouTube Subscribers 210Type Nano Since Aug 2010 Follow Get Email Contact

The Speak Foundation Non-profit Organization

Youtube Channel https://www.youtube.com/channel/UCGcb4iyAk.. Play
Founded in 2008, The Speak Foundation was the first patient led nonprofit organization located in the USA which focuses on being a voice for all individuals living with Limb Girdle Muscular Dystrophy and other rare forms of muscular dystrophy. We also organize the International LGMD Conference and publish the professional magazine LGMD News Magazine. To find out more about how we are making a difference in LGMD and to receive a free subscription to LGMD News Magazine, visit our flagship website www.thespeakfoundation.com.MORE Email ****@thespeakfoundation.com
YouTube Subscribers 632Type Nano Since Mar 2016 Follow Get Email Contact

MyFSHD

Youtube Channel https://www.youtube.com/channel/UCpMOgLMqN.. Play
MyFSHD -- based in Reno, Nevada, USA -- is a source for education about all-things-FSHD. Scientists Drs. Peter and Takako Jones, whose sole focus is facioscapulohumeral muscular dystrophy, other scientific contributors, and ambassadors across the globe who battle the disease, aim to help the worldwide FSHD patient community find answers about their FSHD status through education, advocacy and saliva-based FSHD research testing accessible worldwide, at no cost to individuals. Visit MyFSHD.org. Tune in to MyFSHD Podcast with Dr. Peter Jones and guests (Spotify, Apple, Google, Amazon Music,...MORE Email ****@myfshd.org
YouTube Subscribers 291Type Nano Since Sep 2020 Follow Get Email Contact

Muscular Dystrophy Foundation of South Africa

Youtube Channel https://www.youtube.com/channel/UCNKqI1m5C.. Play
YouTube Subscribers 176Type Nano Since Feb 2022 Follow Get Email Contact