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Welcome to Running for Rare Diseases17 Boston Marathon runners dedicated to making a major positive impact on the lives of people with serious diseases have teamed up with NORD to make a difference. Click here for more info.
- lesley-anne anderson on Brianna’s Story – Hereditary Spastic Paraplegia
- Shane James on WANTED: Passionate Patient Partners!
- Allen Bernard on Brianna’s Story – Hereditary Spastic Paraplegia
- Hande Ersarac on Brianna’s Story – Hereditary Spastic Paraplegia
- Anne Burtenshaw & Ed Johnson on WANTED: Passionate Patient Partners!
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The Running for Rare Diseases Team is seeking passionate community members to join our 2014 Boston Marathon Team as patient partners! Patient Partner Testimony: For those of you who don’t know me, my name is Kristin. I’m an avid runner … Continue reading
Team Wylder Nation Race Report: Ghost Train 100 Mile Endurance Race 10/26/13 – 9:00 AM From the top going clockwise…Kaitlyn, Lily, Riley, Amber, Faith, Quinn, Trek, Jacob & Wylder (center) I got up at 5:00 AM and went through my typical … Continue reading
Tomorrow, I will run with my team of angels, Trek, Jacob, Kaitlyn, Quinn, Lily, Riley, Faith and Amber and Wylder at the , Ghost Train 100 endurance race. October is … Continue reading
Most of you know about the injury which occurred at my last 100 mile race attempt on June 15, 2013. Since then, I have aggressively sought to overcome this adversity. I have made many changes in my training including adding rolling, … Continue reading
By Andrew and Emma We blogged earlier about our “Canada-Germany Running Connection” and thought it was time that we update you on our recent races in Germany. Andrew says: I’m back in Boston since running the Berlin Marathon on September … Continue reading
Rare Disease Day takes place on the last day of February to raise awareness of rare diseases and their impact on real people’s daily lives. In 2012, a relay style torch run, linking the work sites of Genzyme in Massachusetts, … Continue reading
This past February, Emma, a Gaucher Patient, was the guest speaker for the Rare Disease Day events held in Massachusetts. During her visit, Genzyme Employees heard about her Gaucher advocacy project called “My Normal“. Emma developed this program as a … Continue reading
A couple of weeks ago, I was traveling with an engineer I had recently hired to Philadelphia. After boarding, I was looking through my schedule for the week and realized that she and I had a scheduled one on one … Continue reading
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 … Continue reading