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

by Don M., Mississippi

This is abridged for the newsletter from his full report

Susan M., Peggy M., and Gay V. in the Blue Mountains

Susan M., Peggy M., and Gay V.
in the Blue Mountains

During a vacation trip to Australia in March 2001, my wife Peggy and I participated in a meeting of the VHL Family Alliance Australia. We rented a car near Brisbane and drove to Sydney, enjoying the friendly people and beautiful vistas along the way. Each morning we would wake up and watch the sun rise over the Pacific. It challenged my sense of direction. We were introduced to a few foods we were were not accustomed to -- squid, lobster, prawns, octopus, and a delightful treat -- bugs! Not insects, but a crustacean tasting somewhat like lobster or shrimp.

Don M. with albino kangaroo at Australia Zoo

Don M. with an albino kangaroo at the Australian Zo, home of Steve Irwin, Crocodile Hunter.

In Sydney we were joined by Gay V., co-chair of VHLFA Australia. She and her husband Paul are a loving couple, full of life and spirit. Like most other VHL families they live life to its fullest. They bent over backward to chauffeur us around Sydney and out to the Blue Mountains, 50 miles inland, to see the rugged cliffs and waterfalls and the legendary Three Sisters rock formation. I was walking near Pittwater Bay when I was stopped dead in my tracks as a wallaby stepped out in front of me. We stood facing each other for a moment and then the wallaby hopped off. I sat down on a small bench to get my act together. In a few minutes the rest of the group joined me. As I rose, out from under my bench came a three-foot lizard. It slowly walked (as lizards do) toward me and climbed on the wall I was sitting on. Peggy made a quick exit.

Babs from Victoria; Jon and Val J., VHLFA Chairs from New Zealand; and Jennifer K., Co-Chair from Queensland joined us later in the week. The meeting took place in North Sydney with about 45 attendees. Two guest speakers, Dr. David McKay of the Ophthalmic Genetic Service and Dr. Lesley Andrews of the Hereditary Cancer Clinic at Prince of Wales Hospital provided information about ophthalmology and genetics. Peggy and I had the opportunity to speak with several VHL affected and family members from the east coast of Australia. Basic medical care is nationally funded in Australia, and supplemental insurance is available to complement it. Other than that, they have the very same concerns shared by the rest of us with VHL around the world.

I would be remiss if I did not related the story of Peggy and the Kangaroos. While at the zoo Peggy had the chance to feed the kangaroos. She picked up a bag of kangaroo feed that looked suspiciously like puffed rice and walked out into the kangaroo enclosure. There were about 50 kangaroos of all sizes lying in wait. As she started to feed a couple of the kangaroos, a crowd began to encircle her. One of the bolder kangaroos started to slap at her arm to get her to drop the food. Peggy thought she could hide the bag behind her back, not knowing she was surrounded. Perplexed, she held tight to the bag and proceeded to give the same lecture that she would give to the children she cares for in her Day Care as to the etiquette of waiting your turn. We all expected her to start teaching them to say, "Please" and "Thank you."

The trip to Australia was a dream come true and we look forward to going down under sometime in the near future. Thank you to all our friends in Australia and New Zealand.

Notes: This trip was privately funded. No VHLFA donations were used to fund this trip.

1. Ibacus alticrenatus, a slipper lobster or shovelnose lobster of southeastern Australia. It is excellent eating, but not as popular as rock lobster. Click here for a photo and more information, or here for an interesting recipe for Bugs

2. Wallabies are marsupials from Australia, Tasmania, New Zealand, and New Guinea. They are small- to medium-sized kangaroos. There are 30 different types of wallabies that live in many types of habitats, including rocky areas, grasslands, forests and swamps. They have a strong tail and hind legs. They feed on seeds and grass. They are quite friendly and can be hand-fed. Click here for a photo.

As printed in the VHL Family Forum 9:5, December 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.