December 3rd, 2019 is #GivingTuesday, a day where we ask you to consider supporting team Run4Will and our 8th annual Walt Disney World Marathon weekend races as a part of the Race to End Duchenne team and Parent Project Muscular Dystrophy. This year our team has a number of returning members. Bill Ozaslan a founding member of Run4Will is joining us again and will complete the Dopey. Returning 10K team members are Maggie Novello, Kristina Berryman, Bridget Anderson, Chris Hancock, and myself. New additions to the 10K team are Jennifer Smith, Eileen Habesland and Nicolas Novello. Our final member is a spirit runner who has worked hard to put together a high school service project to raise funds and awareness for Muscular Dystrophy, William Hancock! Welcome aboard everyone!
Please join team Run4Will in the race to end Duchenne and support Parent Project Muscular Dystrophy and the wonderful work they do.
Here a brief list of some of the important initiatives PPMD has accomplished in 2019 with your generous support:
- Establishing the first ADULT Certified Duchenne Care Center, University of Missouri Health Care. This is huge…why?? Because of the work of PPMD and other organizations in establishing a standard of care and advocating for early intervention in diagnosing Muscular Dystrophy a number of patients are surviving into adulthood. Let that sink in.
- Provided a number of research grants to help doctors understand the disease and improve patient outcomes.
- PPMD Awards $148,000 in Grants to Improve Cardiac Function in Duchenne
- PPMD and Duchenne UK announced the joint funding of a project to create a set of agreed and validated Patient Reported Outcomes (PROs) for use in Europe and the US.
- October 2019 saw the first baby tested via PPMD’s newborn screening pilot in NY State. Early diagnosis is crucial for care and interventions.
For more 2019 wins, visit PPMD’s site at: https://www.parentprojectmd.org/news/
Finally, we believe in PPMD so much that in March of 2019 we added advocacy to our list of PPMD activities. Chris and I traveled to Washington, D.C. to join other PPMD families to advocate for continued funding of programs and research to help end this disease. Advocating for a cause near and dear to our family was a powerful experience. In the current D.C. climate where everything is partisan our mission was bipartisan and while we met mainly with staffers of Democratic Massachusetts Senators and Representatives we also sat in on a fellow advocate’s meeting with their Republican Representative from Ohio. Each Congressional staffer we met with, no matter their party affiliation, listened to our “asks” attentively, and peppered us with questions. Support for our cause crossed the aisle. Muscular Dystrophy is a bipartisan issue and we can’t even hope to find a cure without everyone working together.
This year as we get ready to head down to Orlando, Florida to complete another 10K, we are more convinced than ever that PPMD’s work is invaluable. Through the organizations efforts my family can imagine a world where those living with Muscular Dystrophy can expect to live a long, healthy and active life.
As always, we appreciate your valuable support.
Our team fundraising page is here:
To support William’s fundraising (and receive a My Intent bracelet) go here: https://tinyurl.com/soy9wk4
Thank you for your generosity,
The Hancocks and Team Run4Will
To make a donation via mail. Please send checks, 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)
All funds raised will benefit Parent Project Muscular Dystrophy (parentprojectmd.org) and go directly toward researching a cure. Your contribution is 100% tax deductible.