Last year, just around this time, I had the privilege to travel to Rochester, New Hampshire to meet a courageous young woman named Stephanie Foster.
Many of you have read about Stephanie on NORD’s website, blog site and Face Book page. In case you haven’t read her story, you can read it here.
Stephanie may have lost her physical battle with an undiagnosed disorder – but her legacy is very much alive and well!
Having extracted a promise from her parents, Laurie and Steve, to continue her mission – and with the strength and forethought to enroll her younger sister, Lauren, and older brother, Eric in this mission — Stephanie set the stage for a second fund raiser, which was held on June 15, 2013.
“A Rare Night” was once again a fantastic success. Stephanie’s fund has more than tripled since it was started just one year ago!
The money raised by Stephanie and her family has been entrusted to NORD as the “Stephanie Foster Educational Fund.” These funds will go to programs that raise awareness about the issue of undiagnosed diseases and will support scientific research in this area.
Having attended the second annual “A Rare Night” event, a few things were clearly evident:
Donations to the “Stephanie Foster Educational Fund” at NORD can be made online here.
Or, checks can be mailed directly to NORD. (Make sure to note what your donation is for!)
In the meantime, watch and listen to two videos that were shown during the second “A Rare Night” fundraiser (now, officially, an annual fund raiser). The first is a spontaneous video filmed at the event, with Lauren speaking about her indomitable sister. This video was lovingly made by Tim O’Leary, a friend of Lauren Foster.
The second is a photo montage with music, created for the event by Lauren Foster.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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