Friends and Family,
This year, for the 8th straignt year, I will be running the Boston Marathon which takes place Monday April 21, 2014 with the guidance of two angels; Wylder who lost his battle with Niemann Pick A at just 3 years of age and Mylee who was taken from us just prior to her sixth birthday by Mitochodrial Disease. These diseases are 2 of 21 rare diseases represented on this year's team and only a few of the near 7,000 rare diseases in existence.
We are raising money and awareness for a very special program. Last December, Genzyme and the Genzyme Marathon team, in partnership with the National Organization for Rare Disorders (NORD), announced the creation of 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 (NIH) Undiagnosed Diseases 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
I am organizing this Playlist Fund Raiser. Here is how it works:
1. Donate only $5
2. Be sure to display your name as the donor.
3. In the ‘comment’ field, put the title of your song, including the artist.
4. I will download the songs to our playlists
5. I will also assemble a wrist band of all songs/donors and carry it with me so thatI can see who donated each song during the run.
6. On April 21st, while running the Boston Marathon, I we will listen to the playlist as additional motivation.
7. I plan to run for about 4 hours so my goal is to assemble a list of 80 - 100 songs.
8. Become part of our community by one of the following:
Subscribing by email to our website http://runningforrarediseases.org/ using the link on the right sidebar. This will notify you whenever new posts appear on the site.
“Liking” the team’s facebook page. We’ll post links there to new content on this site as well as photo galleries that will show up in your FaceBook news stream.
“Following” the team’s http://twitter.com/run4raredisease”> twitter feed run4raredisease. You will get notified of new developments here as well as get event updates
Helping us get the word out by sharing/re-tweeting/forwarding information to your friends