Maria S. represented VHL at a booth at the Philadelphia Fit Fest, sponsored by NBC TV News, Channel 10 Philadelphia. Maria gave out brochures and chatted with hundreds of people. It was a wonderful opportunity to raise consciousness about VHL. Among those she met were three celebrities: Seth Peterson, who is the son on Providence; Maureen O'Boyle, from Extra; and Chris Meloni, from Special Victims Unit. See photos from Fit Fest.

New England

Fred Turner, chairman of the New Hampshire chapter, delivered a talk to a group of genetics professionals in Providence, Rhode Island, on a consumer’s view of DNA testing. His presentation was very well received, and stimulated much discussion. Most of the attendees had never had the chance to talk with an affected family before this.

Wisconsin Chapter

Mary Kay S., Chapter Chair for Wisconsin, is very excited about her duties and responsibilities. She is 41 and lives in Cottage Grove, Wisconsin. "VHL was diagnosed in 1997 in my left eye. In May 1998 other cysts and tumors were discovered. In struggling to accept further complications of this disease, I reached out and found the VHL Family Alliance. I don’t know what I would have done without this group! After getting back on my feet, I wanted to become involved to help others.

"My father had VHL and unfortunately died at the young age of 33 in September 1967. With my work in helping others in Wisconsin, I am doing it all in honor and memory of my Dad. He missed the technology we have today that enables us to live somewhat normal lives. I want to lengthen people’s lives and reduce the need for surgeries. My dream is to see a cure in my lifetime.

"I am looking forward to meeting everyone with VHL in the state of Wisconsin, and working with you to make more contacts in the medical community, raising their awareness of VHL, and helping to create an outstanding supportive environment for people with VHL in Wisconsin. We have some wonderful doctors here. Let’s make sure they know about VHL, and about how to help us manage our health and enjoy life!" Please write to her at us-wi@vhl.org, or reach her via the hotline, 1-800-767-4845.

As printed in the VHL Family Forum 8:2, June 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.