January 2019 will be our NINTH year running for Parent Project Muscular Dystrophy (PPMD) and our seventh year running in their largest yearly fundraiser, the Walt Disney Marathon Weekend! In that time our efforts have grown from supporting Chris and his crazy running to a team. Team Run4Will is made up of lifelong friends, new friends, friends of friends, and many families. To date our team has included over a dozen runners. This year’s team features a trio of sisters, some old faces, some new faces, and lots and lots of heart. We aren’t all runners, but we sign up anyway and flog ourselves and every
year at the finish line celebrate surviving and vow to come back again next year. Why? Why do this?
Well, in the years since we started this crazy adventure, we’ve seen advances in research and quality of life for those with Duchenne continue to improve yet there is still no cure.
So, we run. We run for William. We run for all affected by Duchenne. Sadly, we see first-hand how swiftly Duchenne progresses so our efforts to improve qua
lity of life, slow and eventually end it must be equally aggressive. Although William continues to thrive and find joy in life, time is ticking. In April 2018 we had our first reality check in a long, long time. William’s Cardio MRI showed a decrease in left ventricle function. We’ve add another medication in the hope of keeping his heart healthy, but the decline can’t be stopped, only slowed if we are lucky.
This is where we need your support. With your help we can affect change and progress with PPMD. PPMD is the largest nonprofit organization in the United States focused entirely on Duchenne and has improved the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.
Your donation dollars help fund research that is making great strides and hold real hope for our family! Want to see results? Read on….
- In January 6, 2017 PPMD announces a $2.2 million dollar grant in support of Dr. Jerry Mendell, Dr. Louise Rodino-Klapac (co-PI), and Nationwide Children’s Hospital to explore gene therapy in Duchenne.
- On January 5, 2018 at the PPMD Marathon Weekend Pasta Party, Pat Furlong announces that Dr. Jerry Mendell contacted her and said they successfully dosed the first Duchenne patient in the Microdystrophin Gene Therapy study.
- On June 19, 2018, at Sarepta’s “R&D Day, Jerry Mendell, M.D. of Nationwide Children’s Hospital presents positive preliminary results from its Phase 1/2a gene therapy clinical trial assessing AAVrh74.MHCK7.micro-Dystrophin in individuals with Duchenne.”
The success and speed of this research is astounding and wouldn’t be possible without your continued generosity and support. So thank you for giving our family hope. Thank you!
This year we are running the 2019 Disney 10K with Team Run4Will. We appreciate your generous support.
How you can help
Click “Donate Now” on the right and make a donation or if you prefer, you may also mail a check, made payable to Parent Project Muscular Dystrophy, to:
Parent Project Muscular Dystrophy, 401 Hackensack Avenue, 9th Floor, Hackensack, NJ 07601
(Please note that the check is in honor of Team Run4Will/Disney World in the memo)
All funds raised will benefit Parent Project Muscular Dystrophy (join.parentprojectmd.org) and go directly toward researching a cure. Your support is tax deductible but, more importantly, it’s needed right now.
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