Running for Sam
Dear friends –
After a year off, the Disney Marathon will be held again this year - after running my miles at home last year, it is going to be awesome to run at Disney again! This is one of the best times of year for our family - Abbie, Nick and Ben will be running for Sam again, and we will finally be able to be with our PPMD families! With over 250 runners, the PPMD team is one of the largest charity teams at Disney World. PPMDs running team helps support our research, advocacy and care programs and has helped fund over $10 million since it was started.
When Sam was diagnosed, there were no drug trials on the horizon and very little hope. Today, there are several clinical trials in process and there a many reasons to be optimistic about the future for kids with Duchenne. I think the advancements in care in the last several years helped extend his mobility and will help extend his life. Sam was able to participate in his first clinical trial this year, for a drug called epicatechin. Although the initial results from the trial have not been promising, it is still exciting to have been able to participate. We are hopeful that the cardiac gene therapy research that we have been helping PPMD fund for the last several years may be headed to a clinical trial in the next year.
But there is still a long way to go. Medical research is a lot like running a marathon - it takes a lot of time and effort, and you never really know if you are going to reach your goal until you cross the finish line. Your support over the years has helped fund critical advances in research.
I would really appreciate your support in our fundraising efforts for Parent Project Muscular Dystrophy, an organization founded almost 20 years ago by families of boys with Duchenne, with a goal of aggressively pursuing treatments, and ultimately a cure, for this disease. We are having an impact - there are projects in motion today that we believe will have a significant impact on the way Duchenne affects Sam and the 20,000 other boys in the US with the disease.
You can make an on-line donation on the donate button above, or send a check made out to Parent Project Muscular Dystrophy to my home address:
953 Stevens Road
Rockwall, TX 75032
Thanks for your support!
John, Stefanie, Abbie, Nick, Ben, Sam and Sophie