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FAMILY ALLIANCE

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March 2003 Download a printable copy of this issue

Natural History of Hemangioblastomas, reporting recent research from the U.S. National Institutes of Health
American Brain Tumor Association Sharing Hope Conference
New NSGC President: Robin Bennett of Washington State
VHLFA Spanish Hotline opens!
Pioneering for Hope, by Tammy N., Mississippi
Patient and Family Travel, by Altheada J., New York
The Gift of Friendship, by Jan C., Illinois
Nominations Open for Board of Directors
June Meeting in Nashville
Do I Want to Know? by Ken C., Indiana, age 14
A 'Normal' in DNA Testing Can Bring New Problems, by Carey Goldberg, The Boston Globe
Canada Meeting Postponed
Health Disparities
Crucial Conversations in Hospitals
A Man's Guide to Coping
First Meeting in Japan, by Hanako Suzuki, Tokyo, Japan

Cari E., Ohio

*Cari with daughter Siera*

Cari was diagnosed with VHL less than two years ago. After contacting the VHL Family Alliance and learning about the on-going research for VHL, she felt encouraged and hopeful. She realized the need for public awareness and began a vigorous effort to spread the word. She wrote to friends, family, neighbors and businesses to educate and raise funds for research and awareness of VHL. An all day activities event was held at her Dad's business with coverage by local newspapers and TV station. Her Dad's employees also held a car wash, all to bring VHL awareness to the public. Cari is a dedicated Volunteer giving generously of her time, energy and talents.

As printed in the VHL Family Forum 11:3, September 2003. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.