National Organization for Rare Disorders Awards Grant to Support Research in Stiff-Person Syndrome
I am really excited about this research grant for several reasons.
1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure...awareness for us! ;)
2) Lundbeck's continuing interest & involvement in NORD's outreach through Rare Disease Day sheds light on how many are touched by a "rare" disease. One in 10. Sobering and humbling we were chosen for their donation. I am grateful.
3) The NORD SPS research fund, gifted by several small donations through the years, became a collective research grant of benefit. It takes many to achieve something great. ;)
4) NORD has always been an informative source of support and information for 7,000 rare diseases. They were my first outside contact when I was diagnosed in 1994. They have greatly expanded and continually work for the rare disease community.
5) Rare Disease Day has grown to epic proportions--worldwide in conjunction with Eurodis, facebook, media events, blogs...in a continuing effort to educate and impart understanding to a world unaware of the millions who are afflicted with a rare or orphan disease. Last year's USA Rare Disease Day front liner was an SPS story about an amazing woman with Paraneoplastic SPS & her dedicated husband. (I think highly of this couple.)
6) Research brings awareness, but it also inspires hope. Another puzzle piece may be discovered, a better treatment, maybe a cure! ;)
I hope this research grant gifts you with encouragement that with time, every little thing "one" may do or give can culminate into a major accomplishment. Tom Revenaugh & Stephen Hyde were SPS friends who have passed. Both designated their memorial tributes go to the NORD SPS research fund. I am taking a moment to honor their memories with their contributions to this grant.
Hope on the wings of angels.
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