In spite of some really divisive and destructive barriers enacted recently in our nation, I’d like to offer a post about inclusiveness and productive connections. I’m partnering with the Running for Rare Team as part of my quest with my Boston Marathon journey to raise awareness of sitosterolemia. Fundraising information will come shortly, surely, but I first want to introduce you to Running for Rare and the special work it does with the National Organization for Rare Disorders.
Running for Rare Team
Running for Rare has brought together a community of runners since 2008 to raise funds for NORD by running marathons. Recently these funds have gone directly to NORD’s Undiagnosed Diseases Network and its Patient Assistance Program. The program helps families and patients, who have tried everything they can when seeking a diagnosis, afford the extra testing necessary to be enrolled in the UDN, with hope of finding a diagnosis and treatment.
The UDN’s main mission is to connect these families and patients with leading clinical and research experts who seek to solve these medical mysteries with the most advanced technology. In doing so, UDN can propel forward our understanding of the human body. Stanford Heath Care is one of the Clinical Sites of the UDN; I did not participate with the UDN while being seen by SHC doctors en route to my diagnosis of sitosterolemia, but I can attest to the quality of care at SHC and their determination to work with challenging patients.
Running for Rare spawned out of a running team from biomedical company Genzyme that connected workers and Boston Marathon runners with patients with rare diseases. The goal has always been to support NORD, but in addition to providing fundraising and awareness to the cause, runners on the team have also been partnered with a particular patient and family to establish a community of participants.
Running for Rare Events
More details will surely follow, but Running for Rare’s main events this year will be participation in marathons, as in years past. Here’s a list of the marathons and the deadlines for applying if you’d like to Run4Rare:
Race: March 19, 2017
Deadline to Run4Rare: February 1, 2017
Race: April 17, 2017
Deadline to Run4Rare: why wait?
Race: April 29, 2017
Deadline to Run4Rare: April 1, 2017
Race: May 7, 2017
Deadline to Run4Rare: April 15, 2017
Excited to get things underway with the Running for Rare Team. As far as I have come, and as fortunate as I have been, I feel like I can’t just run this one for myself. More to follow, including posts featuring others who have been and will be integral to my running this year’s Boston Marathon.