This past year, I had the pleasure of meeting Phil Maderia when he was honored at the first Wylder Nation Foundation Gala in Denver. Phil is the founder of the Running for Rare Disease (RFRD) team which has been raising awareness for rare diseases like Niemann Pick since 2008. We are thrilled that Phil asked Garrett to be his patient partner in the Providence Marathon this year. Our family will be flying out to support Phil and 79 other members of the RFRD team in Providence the day after Garrett's 5th birthday on May 3.
The RFRD team is raising money and awareness for a very special program. Genzyme and the Genzyme Marathon Team, in partnership with the National Organization for Rare Disorders (NORD), created a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health Undiagnosed Disease Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program. NORD is a federally registered non-profit organization (TAX ID 13-3223946)
In my effort to raise awareness for rare diseases like Niemann Pick as well as to show support for Garrett, I have joined the RFRD team and will be running in the Providence Marathon with/behind Phil. I am also proud to join the team started by Genzyme employees. Genzyme is a company that develops medications for patients with rare diseases like Niemann Pick.
My kids have stepped up to the plate to raise awareness as well. Grady and Avery are anxious to participate in the Providence Children's 1 mile race. Not to be outdone, Garrett has decided he is going to compete in the 1 mile race as well. With the help of his brother and sister, I am confident he will continue to amaze us.
My goal is to have 50 different people pledge a donation to NORD. Please show your support for Garrett, NORD, and the Running for Rare Disease team by placing a pledge and letting your voice be heard. Garrett and the rest of Team Hopkin will do our best to represent your pledges in Providence.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and please forward this on to anyone who you think might want to support this cause.