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Boston-based Charity is in the Top 200 Charities Honored by Chase Community Giving
Contact: Joyce Graff, 800-767-4845, ext 710
The VHL Family Alliance (VHLFA) has been awarded a $20,000 grant as part of the Chase Community Giving contest in Facebook. Chase asked Facebook users to vote and help them give away $5 million to worthy causes around the country.
The VHLFA was born in Brookline, Massachusetts, in 1993, to find better ways to diagnose and treat von Hippel-Lindau, a genetic cancer syndrome. At that time, it was considered a very rare disease, almost a medical oddity, that affected numerous parts of the body, seemingly unconnected.
Patients banded together from 106 countries. What started as a mammoth effort by fax and paper mail has today become a global operating, connected mostly by the internet.
Many top researchers have studied VHL over the years, including Dr. William G. Kaelin, Jr., of the Dana Farber Cancer Research Institute in Boston. “The first day I connected to the internet,” says Dr. Kaelin, “I went to a search engine and put in ‘VHL’ never expecting to find anything. Up popped this little non-profit in Brookline! I could practically throw a stone from my office to where they were!” Small as it was, VHLFA put together a research grant to encourage Dr. Kaelin’s research.
While there is still no cure for VHL, there is more hope today than ever before for people with VHL. Together this group of patients and caring physicians and researchers has come to understand the underlying issues, watch early for signs of trouble and deal more constructively than ever before with problems as they arise.
“Winning the Chase Contest is one more example of the power of community action,” says Joyce Graff of Brookline, Director of the VHL Family Alliance International, now based at Cleveland Circle. “It is only through cooperative action globally that we have been able to make progress in this disease. We have worked together for every forward step we have achieved, and this is one more example of how a group of dedicated citizens can make a difference. We are grateful to all our family, friends, and acquaintances who answered our call and voted for our cause.”
For more information about VHL and the VHL Family Alliance, please see http://vhl.org or the Chase agency page at http://www.tinyurl.com/vhlchase.
Joyce Wilcox Graff Boston, MA 02135-7787 |
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