2020 WALT DISNEY WORLD® Marathon Weekend, Presented by Cigna

2020 WALT DISNEY WORLD® Marathon Weekend, Presented by Cigna

Reflection Garden Dedication
Reflection Garden Dedication

Team Danny 2020

For many of you this annual letter falls on your inbox just a few short weeks before the chaos of the Holidays begin. It’s my 14th year drafting the letter and the first where I struggle with what the message is. I have started and stopped this message 3 different times over the past several weeks…. For 12 years we shared the journey and told the story of a young boy who was the central character. We told about the Ups and the Downs, the Highs and the Lows and we brought you into some of the darkest corners of life with Duchenne. It personalized the story, made it real, made it relatable. Last year we memorialized on that Journey as Danny lost his Battle with Duchenne at the Age of 16 on July 12th, 2018.

Throughout the years we have introduced "Legacy" as a central theme to Team Danny with a quote from the musical Hamilton. "Legacy…. What is a Legacy? Its planting seeds in a Garden you never get to See." On November 24th, 2019, The Bluejay Community Reflection Garden was Dedicated as an 8+ month project executed as Jack's Eagle Project. That dedication took place exactly 5 years to the day that Jack sent his Aunt a Christmas List with only one thing on it… "For Danny to be able to walk". Seeds were planted many years ago…

We committed 14 years ago to running. Team Danny has logged tens of thousands of miles. We have seen our team grow and shrink through the years and we have helped contribute $761,826 in the Race to End Duchenne. We have seen trials slow the progression and we have seen the first ever FDA approved Gene Therapy. Science is accelerating at an exponential rate and we will be on the forefront of helping raise funds to drive these advancements. The ultimate Legacy is to hang up our Running Shoes when the Race to End Duchenne is over… But we need your help to get there…

Team Danny laces up for our 14th year in the Race to End Duchenne. Whether we are 2 running or 22 running we continue that commitment made to Parent Project Muscular Dystrophy (PPMD) and respectfully appeal to you to help us continue Danny’s legacy through the incredible and committed work of PPMD. In 2020, we have set our goal at $100,000 and currently stand at $46,802.50 with our full 14 year total currently at $761,826! Staggering numbers from a few team members that laced their shoes up 14 years ago and an overwhelming support from family, friends and a community. To say we are humbled is an understatement…

Our commitment is one of continuing to build that legacy and most importantly above all else to never forget a boy that gave us so much while with us and most importantly continues to even though he is not… While we hope over the years we have been able to help you get to know Danny, we leave you with a few great tributes….

Because we knew you…. Thanks Danny for showing us that children often can be the best teachers…. We love you and miss you!

If you are able to donate, please strongly consider this cause as hopefully it has and/or will become personal. Donations can be made on-line through the link below. If you prefer to pay via Check, please email Michael at mpnapoli1@gmail.com for mailing address info. Additionally, please inquire into whether your employer offers company match and let us know as this exponentially impacts our efforts. Matching contribution forms can be sent to Parent Project Muscular Dystrophy - 401 Hackensack Avenue, 9th Floor Hackensack, NJ 07601.

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