Finn's Story


     Finn was diagnosed with Duchenne Muscular Dystrophy at 9 months old.  Duchenne (DMD) is a rare genetic disease that primarily affects 1/3500 males born worldwide. It causes the muscles in the body to become weak and damaged over time, eventually fatal.  DMD is caused by a genetic mutation that prevents the body from producing dystrophin, a protein that muscles need to work properly. Without dystrophin, muscle cells become damaged and weaken over time. Finn will develop problems walking and breathing and eventually the muscles that help him breathe and his heart will stop working. Duchenne is one of the most serious genetic diseases in children worldwide.  DMD is irreversible and progressive and at this time there is no cure.

Finn is now 19 months old and is scheduled to see Dr. Wong, MD at  Umass Memorial Medical Center which is located in Worcester, Massachusetts in May 2019. Finn is doing well and shows no signs of brain or developmental issues at this time, which is very common in boys with DMD.  He lives in Longview,Texas with his mom, dad and 15 year old brother Tayler.

Parent Project Muscular Dystrophy fights to end Duchenne. They accelerate research, raise their voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.


PPMD is a comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy- our mission is to end Duchenne.

We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite, and educate the global Duchenne community. 

Everything we do- and everything we have done since our founding in 1994- helps people with Duchenne live longer, stronger lives. We will not rest until every person has a treatment to end Duchenne. 

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