Our journey with muscle disease began just a few days after we celebrated Reagan’s first birthday. Despite the feelings of loss and uncertainty that came along with hearing that our daughter has spinal muscular atrophy (SMA), we were determined to make sure Reagan has the happiest, brightest and healthiest future possible. And that is when we were so fortunate to become part of the MDA community.
MDA has provided invaluable support through its medical clinics and by connecting us with other families. MDA also gives us the tools and knowledge we need to keep our daughter healthy and happy. Best of all, MDA provides hope through scientific re- search that one day will lead to improved treatments and even a cure for muscle disease. MDA’s army of staff, doctors, nurses, researchers, volunteers and sponsors is committed to helping MDA save and improve the lives of people battling muscle disease.
And because of MDA, Reagan has reaped the benefits of the wonderful life experiences provided by MDA’s summer camp program. Camp is “the best week of the year,” according to Reagan and countless other kids, and we are grateful because it has helped Reagan gain self-confidence and learn how to ask other caregivers for help in meeting her needs.
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 and — above all — a world-class research program that is on track to 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 lifesaving 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 disease.
MDA does incredible work in communities like ours all across the country — and it’s an amazing source of strength, support and hope for all individuals and families affected by neuromuscular disorders. We encourage you to turn to MDA during your journey with muscle disease. Because of MDA, we are not alone in this journey — and you’re not alone, either.
With love and understanding,
Jenny and Joe Imhoff
Parents of Reagan Imhoff, MDA's National Goodwill Ambassador