For the booklet in English:
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Para el folleto en español:
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When our son Bryson was 5, we received news that no parent wants to hear — our boy is affected by a neuromuscular disease, Duchenne muscular dystrophy (DMD) to be exact. While we were shocked and heartbroken at the time, we quickly realized that our family could — and would — rise to the challenge.
One of the first steps we took was to call the Muscular Dystrophy Association. It didn’t take long to realize this was a wise decision. It felt like our family grew exponentially overnight! With the support of the entire MDA community behind us, the challenges before us seemed less daunting and our fears about the future were replaced with optimism and hope.
Our new extended family includes MDA staff, doctors, nurses, clinicians, researchers, sponsors and other individuals and families who, like us, live daily with neuromuscular disease. We’ve realized we’re not facing this journey alone — and you’re not alone either.
In this booklet, you’ll find information about MDA services that can make a critical difference in day-to-day life with neuromuscular disease. MDA provides medical care, up-to-date information about more than 40 forms of neuromuscular disease, online and face-to-face support, help locating and repairing durable medical equipment, summer camp for kids (Bryson’s favorite!) and — above all — a world-class research program that someday will put an end to these diseases for good.
This booklet also will give you an idea of the many ways to get involved with MDA’s mission. Volunteering with MDA has helped our family fight back against muscle disease — from raising funds for research, to lending our voices to advocacy campaigns, to sharing our experiences with others in the MDA community, to simply helping to spread more understanding about neuromuscular diseases.
It’s now been several years since Bryson received his diagnosis, and our lives today are busy and fulfilling. Yes, muscle disease affects Bryson’s life — but it does not limit it. Although there are challenges, there also is joy. Through it all, MDA has been there with practical help and real hope for treatments and cures. We wish you and your family the very best in your journey with neuromuscular disease, and hope that you, too, will turn to your local MDA community along the way for strength, help and hope.
With love and understanding,
Phil and Claire Foster
Parents of Bryson Foster
MDA National Goodwill Ambassador