This is just a brief message to thank you for the most complete and effective website I've visited. As a Clinical Geneticist, I'm constantly searching for clear, concise information for my patients and for my own use. You certainly exceeded my expectations.
-- Patricia Gordon, M.D., St. Jude’s Children’s Cancer Research Center, Memphis, Tennessee

We are so very grateful for the VHL Family Alliance and the meeting in Minnesota, and for Joyce’s "VHL 101" class. At least three times we were reminded that everyone with VHL should be checked for a pheo before any surgery, before or during pregnancy, and before labor and delivery. We finally heard it, and used that information to protect my niece Emily and her baby Hanna.

Our family wants to thank everyone for sharing their stories, Dr. Michels and the VHL Board of Directors for providing us with the valuable information that saved Emily’s life, and will help keep her and her sister monitored and safe. Our family has been through a great emotionally stressful ordeal in the past few months, and we sure appreciate the support and help we have received. Thank you so much! — Laurie D., Minnesota

Let’s Cure VHL in this Decade

Improve Diagnosis: Let’s find all those people with VHL who are struggling to find a diagnosis for all their mysterious symptoms.

Improve Treatment: Let’s find improvements in imaging and surgical techniques that will make it easier to treat individual tumors and keep people healthy and productive.

Improve Quality of Life: By supporting one another, by keeping our spirits up, by focusing on the positive and creating real progress, we can live happier lives.

As printed in the VHL Family Forum Research Report 8:5, December 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.