Wylder’s Research Project

In preparation for the Boston Marathon, we held a playlist fund raiser where employees donated $5 and selected a song to be put on the my playlist during the marathon.  It was a great fund raiser and inspired some real creativity amongst employees.  They included some classics like ‘Puff the Magic Dragon’, ‘Muskrat Love’ and of course ‘I am the Warrior’.  I so enjoyed listening to all of the donated songs.  I also wore wrist bands with all of the songs and donors listed so that each person would truly be part of my marathon.  It was fantastic.

As we get ready for our next big race and continue to help build this rare disease community, Kelsey and I  thought we would use the playlist idea to reach out again to the greater community with a hope to inspire more to join and to produce a list of songs that would help get us through the race.   We are estimating that this run will require about 400 songs because it is not a marathon; it is the TARC 100 mile endurance trail race which takes place in Weston, MA on June 14 at 7PM.

You may recall that I ran the Boston Marathon on behalf of Wylder the Warrior; a 3 year old boy who passed away from Neimann-Pick disease; a rare genetic disorder, last July.  Shannon and Steven, Wylder’s parents and also the founders of Wylder Nation, were an incredible inspiration for me during the Boston Marathon and helped me raise over $10,000 for the National Organization for Rare Disorders.  Additionally, the Wylder Nation Foundation and the Translational Genomics Research Institute (TGen) have joined forces to create Wylder’s Research Project, a genomics initiative focused on utilizing the technological advances of Next Generation Sequencing (NGS) to gain new knowledge on potential therapeutic targets for this devastating disease and similar Lysosomal Storage Diseases, and work diligently to translate these new discoveries into possible treatments that can be brought to the bedside.

Kelsey and I are organizing this Playlist Fund Raiser to support Wylder’s Research Project.  Here is how it works:

1.         Donate only $5 to our FirstGiving pages

Kelsey’s Page 

http://www.firstgiving.com/fundraiser/kelseyhoontisTARC100Miler/tarc100mileendurancerun

Phil’s Page

http://www.firstgiving.com/fundraiser/phillipmaderia/tarc100

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.         We will download the songs to our playlists

5.         We will also assemble a list of all songs/donors and carry it with us so that we can see who donated each song during the run.

6.         On June 14^th, while doing the TARC100, we will listen to the playlist as additional motivation (we may need it :-)).

7.         We plan to run for 24 -30 hours so our goal is to assemble a list of 400 songs.

8.         Become part of our community by one of the following:

 Subscribing by email to our website http://running4rare.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

Thank you so much for being a part of this community and for continuing to support rare disease awareness on behalf of patients like Wylder.