Boston Marathon

Introducing the GREAT and wonderful Phil Maderia who is running this years Boston Marathon on April 15th for our Warrior Wylder James.

phil

Team Genzyme  is Running for Rare Disease for the 6th year in a row and with 15 patient partners.  They are all literally raising awarness with every stride they take for diseases that do not get enough attention like Nieman Pick (A).  Phil is a 45 year old family man who has been happily married for 20 years to his beautiful wife Ann.  He has two kids; Matthew (Matty) – 16 and Abigail (Abby) – 14 … and a heart of gold.  He has been with Genzyme for nearly 18 years and have been a runner since 2006.  He has since become an avid endurance athlete doing many marathons, triathlons and now some ultramarathons.  He received his degree in Mechanical Engineering at Northeastern University in Boston and has been at Genzyme ever since.  This is Phil’s 6th time running the Boston Marathon for Rare Disease and his patient partner was Rebbecca Brooks the last three years.  Steven and I are hopeful to meet Rebbecca as she only lives about an hour away from us, and we have been told only wonderful things about her infectious personality!  As Phil prepares for this marathon in sometimes 3 degree weather for our ‘most beautiful’ Wylder … let us show him our support and give him a warm welcome to Wylder Nation … and shower him with LOVE and donations;

http://www.firstgiving.com/fundraiser/phillipmaderia/bostonmarathon

Here are some FACTS about our Rare Disease community to understand why we all should join forces and become a unified voice;
  • Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 350 million people globally
  • Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes
  • The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide
  • While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined
  • It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment
  • There are currently less than 400 treatments approved by the FDA  for the nearly 7000 rare diseases which have been identified
  • While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined
Wylder 2010, Remember Always

Wylder 2010, Remember Always

Here are ways you can follow Phil and his team and send him notes of support

To say that Steven and I are honored that Phil is Running for our Warrior is an understatement … our cup, runneth over.  It is incredible to think that our son, who never took one step, will now be running in one of our Nations largest most prestigious marathons in spirit along side Phil.  We are so proud that Wylder is continuing to share and spread his messages of HOPE and that people like Phil strive to make this World a better place.  What a blessing.  Let us continue to do what we do best Wylder Nation and join forces so that Wylder’s life will continue to change many.  Please share Phil’s donation page http://www.firstgiving.com/fundraiser/phillipmaderia/bostonmarathon which we have also put on Wylderjames.com.  Thank you all so much. xoxo

wylder in his boston sweatshirt fall 2011

wylder in his boston sweatshirt fall 2011

 

 

Comments

  1. this is soo amazing!!! Wylder is so deserving of all the love and support! xoxo ,Chelsea

    • Mommy and Daddy says:

      I think so too Chelsea, and I continue to be overwhelmbed by the goodness in people and how they show there support for Wylder. xoxo

  2. Shannon and Steven, thank you for the kind words, I received a an email from a team member after seeing your post on the web site, it read “I am continually amazed at the incredible people and stories that come into our lives because of this team. This is so moving – the warrior being put to rest in a channel filled with flowers, the whale that was spotted in those same waters, Wylder’s parents spreading hope and beauty through the act of remembering their son and in the midst of a grief I can’t even begin to imagine… ”

    You guys are the GREAT and WONDERFUL ones!!! I am so thankful that we have connected in this way. Phil

    • Mommy and Daddy says:

      Thank you Phil, thank you!!!! We feel so blessed by the people that our Warrior continues to bring into our lives … and you are one we are especially proud to know. xoxo

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