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These children need your help
let's find a cure!
We need your help to find the cure. The pace of research is picking up. Every week there is something new in the news that will have implications for treatment of VHL -- just not quite yet. There is work to do in “translating” the basic research into treatments, testing those treatments for safety and effectiveness, and then getting them approved for VHL. But this year we received a number of exciting research proposals that will take us farther down this path.
Two of the children pictured on this page are the first in their family ever to have VHL. They did not inherit the VHL alteration, but it occurred nonetheless, as a disease of childhood. All these children except Amy have VHL. All four of the affected children have had VHL issues as early as age four.
These are the faces of a new generation of children with VHL. They need our help -- to find better ways to diagnose and treat VHL, and prevent future tumors.
These children have something else very special in common -- they are all working to raise money to cure VHL. Alex and Amy and their family raised $10,000 this year in one fundraising event, which was matched.
What can you do to help?
Recently I was privileged to attend our 7th Biennial Medical Symposium on VHL in London, Ontario, Canada, hosted by our Canadian affiliate, the University of Western Ontario, and the Robarts Research Institute. Speakers and attendees from twelve countries shared ideas, reported progress, and planned new initiatives. The hallmark of this meeting was collaboration.
My cousin, who is affected by VHL called to thank me for my work on the Board of VHLFA I replied that I was lucky to work with such a talented and diverse Board, and hardworking executive director and staff. She said that while the disease has stretched her budget, she was interested in working with us to organize a fundraiser. She had also just registered to be part of the new tissue banking program, and was instilling the importance of vigilance in her daughter, who has an angioma on her optic nerve.
In this one example, I saw how all of us are working together to improve diagnosis, treatment and quality of life for those affected by von Hippel-Lindau disease: The Board helps to steward the goals and mission of the organization; the organization informs and supports our members; we collaborate with our affiliates around the world to bring researchers and physicians together at events like the Symposium; we fund research and encourage others to enter this fascinating area of science; and our members contribute their time, their money and now their tissues to assist researchers in their work.
It takes the time, talent, and effort of all our members – families, friends, physicians, and researchers – to improve the lives of those affected by this disease around the world.
Together we will find more treatments. Fourteen years ago, we had no idea there was this much we could learn. Now we look forward with hope, knowing we have only just begun. Please help us cure VHL.
As printed in the VHL Family Forum 14:3, November 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org |
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