Newsletter 2001

March - June - September - December - Annual Report

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VHL Family Forum, ISSN 1066-4130 Volume 9, Number 1
March  2001      Download a printable copy of this issue

• A Test for Genetic Privacy, by Jerry Ackerman, The Boston Globe
• A Pilot Study of Genetic Privacy, Discrimiation, and Informed Decision-Making, at the Genetic Alliance - Can You Help?
• Looking for Lawyers in all the right places, Thomas D. Rodenberg, esq.
• Uncharted Territory: Pheos and Psychological Symptoms, by Pierre Jacomet

"Based on the experience in our family, patients with pheochromocytomas can present with symptoms akin to neurotic or psychotic states."

• Studies at NCI Seeking Patients, U.S. National Cancer Institute
• Ask the Experts: Polycythemia and Hemangioblastoma
• Ask the Family: Positional Vertigo
• Human Research Protections Course available on the internet
• Physical Activity and Immune Function, by James S. Huddleston, M.S., P.T.

"Moderate endurance exercise, such as brisk walking, stimulates positive changes in ... the body's first lines of defense ... On the other hand, high intensity exercise may have a negative impact on immune function."

• Drink Water!
• Meet the Directors: Jay Platt and Tom Rodenberg
• Chapter Leaders meeting at conference in June
• Pen-Friend needed for girl age 13
• Speaking Tips, by Jay Platt
• Health Management in von Hippel-Lindau: conference June 22-24, Palo Alto
• Help Lead VHLFA to 2004 - nominations for Board and Committee positions due May 15.

VHL Family Forum, ISSN 1066-4130 Volume 9, Number 2
June 2001      Download a printable copy of this issue

• Study of rare disease helps unravel key question of human biology, by Rob Levy, Dana Farber Cancer Research Institute, Boston, Massachusetts
• Sleep Well!
• NCI Vaccine Study
• Your donations make a difference! by Fran Mott, Michigan
• Making tough choices, living with fear, by Susan Friedman
• Enfermedad de VHL - progress in Chile
• Action in U.K. to prevent "genetic underclass", by Zosia Kmietowicz
• Genetic testing derailed at BNSF
• Jay Platt on CNN!
• Long Wait for MRIs in Canada, by Tania Durand
• Call to British Patients, by Dan Whitmore
• Meet the Directors: Sheila Tepper, California
• Resources: carers, HIPAA, insurance
• Ask the Experts: epidural anesthesia, hiccups
• The Truth about Public Speaking, by Jay Platt
• Alabama Meeting, Chapter volunteers needed

VHL Family Forum, ISSN 1066-4130 Volume 9, Number 3
September 2001      Download a printable copy of this issue

• A Family's Milestone: Kidney Transplant, by Frederick Melo
• Q&A About Kidney Transplantation
• Stem Cell Research and VHL, by Joseph Verdi, Ph.D.
• Palo Alto Meeting a Great Success
• New Canadian Leadership
• Nicotine Makes new blood vessels grow

For a long time it had seemed to me that life was about to begin - real life.  But there was always some obstacle in the way, something to be got through first, some unfinished business, time still to be served, a debt to be paid.  Then life would begin.  At last it dawned on me that these obstacles were my life. -- Father Alfred D'Souza

• Meetings in 2002 - Cleveland, Padua
• Travel Assistance from Mercy Airlift
• Defeating Depression, adapted from Milestones
• Audio and Computer text
• VHL in Germany, by Gerhard Alsmeier, Germany
• Sigma Phi Gamma Supports VHLFA
• New Alabama Chapter, by Linda D.
• Triathlon -- Alice completes the Danskin Triathlon

VHL Family Forum, ISSN 1066-4130 Volume 9, Number 5
December 2001      Download a printable copy of this issue

• Pregnancy and VHL, by Yasser Y. El-Sayed, M.D., Maternal-Fetal Medicine, Stanford University Medical Center
  • An excellent review of the literature with guidance for women with VHL from an expert in caring for mothers and babies in high-risk situations

"It is critically important to communicate fully with the doctor . . . even if you have no previous symptoms or no clear diagnosis of VHL.  This information can make the difference between life and death for mother and child. . . . The patient, family, and medical team need to work closely together."

Three companion articles from women with VHL about their experiences with pregnancy.  (All these stories have happy endings!)

• Adventures in Pregnancy, by Pat T., Michigan
• Karen's Story, by Karen H., Pennsylvania
• Renée's Story, by Renée S., Ontario
• Laura's Story, by Laura H., Massachusetts

• VHLFA Down Under, by Don M., Mississippi
• Eva Logan Honored for her work on the Hotline
• Two Meetings in 2002:
  • Update on VHL in Cleveland October 2002
  • Padua Call for Papers, June 2002
• Celebrating 50 years of Brain Research, 
  by Deborah C., Michigan
• Carrying the Olympic Torch: Larry Bennett Honored
• DNA Testing Update:
  • More rapid results in England
  • New source in Hungary
  • Four sites now offer near-100% reliability
• California coverage for people with VHL under GHPP
• David’s Marathon, by David I., California
  • David and his friend Marilyn completed the Portland Marathon

Annual Report 2001

VHL Family Forum, ISSN 1066-4130 Volume 9, Number 4
Fall 2001      Download a printable copy of this issue

When you think that you are the only family faced with this disease, you feel so isolated.  Hearing the experiences of all the families, you realize that we are all in the same boat, and thank goodness for the VHL Family Alliance. -- Sue L., Canada

• We Need Your Help! -- by Peggy M.
• Meet the Board of Directors
• Research Report, by Myriam Gorospe, Ph.D., Director of Research
• Special Thanks to our Volunteers!
• Public Education initiatives -- by Jay Platt
• Challenge!  -- a corporate donor supports VHLFA and others
• Teamwork for Health -- quotes from conference attendees
• Let's Cure VHL in this Decade!
• Progress -- Annual Report of disbursements