Newsletter 2003

March - June - September - Annual Report - December

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VHL Family Forum, ISSN 1066-4130 Volume 11, Number 1

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

VHL Family Forum, ISSN 1066-4130 Volume 11, Number 2
June  2003     Download a printable copy of this issue

• Down's Syndrome May Hold an Important Clue to controlling angiogenesis

• Boston Regional Meeting, November 1, 2003

• On Becoming a Grandmother, by Lee Ann K., Washington

• We Need Your Help

• Lifestyle changes may halt cancer - research on prostate cancer may have implications for other conditions

• Early Eye Testing is Important! - by Eileen M., Australia

• New Clinical Care Center in New York, by Wendy Chung, M.D., Columbia-Presbyterian Hospital

• New Clinical Care Center in Texas, by Eric Jonasch, M.D., M.D. Anderson Cancer Research Center, Houston

• Beta-Carotene May Protect Against Cancer ... unless you smoke or drink

• Why I like the online discussion group

• Resources: meditation, relaxation, and faith

• Genetics Home Reference

• Support and Awareness, by Karen A., New Jersey

• Ask the Experts: Eye Issues

• The Uninsured are at a Disadvantage

• Local Activities: South Carolina, California, Massachusetts, Rhode Island, Maine, New York, Chile

• Ask the Family: Living with VHL

• VHL Tissue Bank

  • Enucleated Eye Tissue Needed

• 6th Medical Symposium on VHL, Kochi, Japan, May 2004

VHL Family Forum, ISSN 1066-4130 Volume 11, Number 3
September  2003      Download a printable copy of this issue 

• VHL and Oxygen Regulation: what we are learning from a new VHL mutation type in Russia, Chuvash Polycythemia

• Important New Information for Physicians: latest recommendations from the U.S. National Institutes of Health

• A Century-Old Exercise Becomes Popular Again: Pilates can increase core strength, especially following brain and spinal surgeries.  by Amy G.L., Arkansas

• DNA Testing for Young Children: a conversation from our online support group.

• Pain versus Promises, by Abbey Myers, Executive Director, National Organization for Rare Disorders

Please give generously through your workplace campaign: Combined Federal Campaign: 2007 Federal # 10934 United Way - please write us in!

• Britain Plans a Genetic Census, adapted from an article by Gwen Kinkead, New York Times

• UK Welcomes Mary Weetman, new chairman

• Von Hippel-Lindau -- Care in the U.K., by Peter Risby, Sally Watts, and Mary Weetman

• Nashville was Great! -- report from the meeting June 21, 2003

• By-Law Changes, by Thomas D. Rodenberg, esq., Director

• Yard Sale Fundraiser, by Lynn G., Tennessee

• VBS Supports VHL, contributed by Audrey C., North Carolina

• Kochi Symposium: Call for Papers

• Join us at Regional Meetings:

  • Midwest: Indianapolis, October 25, 2003

  • Northeast: Boston, November 1, 2003

  • Annual Meeting, New York, June 19, 2004

• Recognizing Caregivers, by Gary Barg, Editor, Caregivers.com

• Volunteer of the Year, Cari E., Ohio

Non-U.S. Members are asked to support their local affiliate group first.  Donations to the international research campaign are always welcome at the address listed below.  Thank you!

VHL Family Forum, ISSN 1066-4130 Volume 11, Number 4
Annual Report  2003 Download a printable copy of this issue

• 100 Years of Progress from von Hippel's paper in 1904

• Research Digest, by Joseph Verdi, Director of Research

• Goals for 2004

• Walk for VHL -- by Ariel R., New Jersey

• Grants Funded 2003-04

• Teamwork for Health -- Let's Cure VHL in this Decade!

• Annual report, Fiscal 2003

• Remember VHL in your Will

• Please give generously! We Need Your Help!

VHL Family Forum, ISSN 1066-4130 Volume 11, Number 5
December   2003      Download a printable copy of this issue 

• Dogs do more than Bark - Adeline V. from Belgium

• Early Results from Clinical Trial - The trial of Novartis PTK-787 in Boston is looking very encouraging.

• What you need to know about clinical trials

• A Tribute to my Mom - from Emily S., New Jersey

• Ask the Experts - pancreas question, by Dr. Steven Libutti, National Institutes of Health

• Regional Meeting Notes - Lahey Clinic, Boston

• 10 Warning Signs of Caregiver Stress

• Newsletter Schedule Changing

• Eugen von Hippel - the centennial of his ground-breaking paper

• Remembering Uncle Eugen - from his great-nephew, Eric von Hippel, a professor at M.I.T.

• Clinical Care Center in Philadelphia - Hospital of the University of Pennsylvania

• Dr. Lewis Joins our Medical Advisory Board -Dr. Richard Lewis, ophthalmology and genetics, Baylor University School of Medicine

• Ask the Family: Dandelions and Cancer

• Why me? Why not me? - Michael L. and Emily S.

• Ask the Family: Dandelions and Cancer - by Joyce Graff

• Please Join us at a Regional Meeting

  • New York, June 19, 2004, VHLFA Annual Meeting

  • Northwest Region, Everett, Washington, Jan/Feb 2004

  • Western Region, Los Angeles, February 21, 2004

  • Southeast Region, Tampa, Florida, January 31, 2004

  • Southwest Region, Dallas, Texas, March/April 2004

• In Appreciation of Peggy and Don M.

• 6th International Symposium on VHL in Kochi, Japan,
  May 20-23, 2004 - Abstracts - Registration