Reaching more people, Funding Research

Thanks to all of you, the VHL Family Alliance was able this year to award two research grants, for a total of $33,495. We are excited and inspired by your outstanding support of these research funding efforts. Let's do it again this year!

More than 6000 brochures have been distributed, and 400 new member packets have been sent out this year.

This year's operating expenses of $36,222 were up only 12%, even though the U.S. population served was up 19.6%, and the worldwide population served was up 40.7%. This is due to the hard work of a dedicated corps of volunteers in this and other countries. We are all volunteers. We pay no staff; we do not rent office space.

The budget for the coming year is $40,000, and our goal for research funding is $35,000. We can only spend what we have. The number and size of this year's research grants will depend on your generosity.

We need your help! As you will see on pages 1 [Griffith research update] and 7 [Kaelin research update], we are already making a difference, spurring additional research on von Hippel-Lindau disease, bringing closer the day when there will be better non-surgical management of VHL.

We realize that not everyone can contribute money, and we want to make sure that everyone has the information they need. This organization is not about money, it's about helping one another. We will always give our help and send literature to whoever needs it, regardless of their ability to pay.

If you can afford to give, please give a little extra for the person who can't. And if you can't afford to give at this time, perhaps you might suggest to a friend or relative that they contribute in your honor instead of buying you that holiday gift.

Last year more than 70% of the VHL families donated an average of $100 each. With 100% participation we can do even more this year. Those extra donations you send with your membership, the T-shirts and pins and cookbooks you buy, and the honor cards you send to your friends, all help to make this organization work.

If you value the 800 number, the Web service on the Internet, the Tissue Bank, the Clinical Care Centers and this newsletter . . . and want them to continue, please, please give what you can. Together we will find better management, and a cure for VHL. Be a Leader in promoting research -- Who better than we to take the lead in this effort?

We send love and blessings at this holiday season and always. -- VHLFA

As published in the VHL Family Forum, 4:4, December 1996. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.