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

DNA Testing in England is being handled by a large clinical laboratory where most mutations should be found within 2-3 weeks, and rare ones within two months. If your testing is taking longer, please inquire through your physician. If needed, feel free to escalate to Dan Whitmore (uk@vhl.org) or to Dr. Maher for assistance.

We are pleased to announce that there is a geneticist in Hungary who is familiar with VHL who can assist Hungarians with genetic counseling and is prepared to do DNA testing for VHL. Dr. Pfliegler has translated our Family Tree brochure into Hungarian.

Prof. Dr. Gyorgy Pfliegler

DE II.sz. Belgyogyaszati Klinika

Nagyerdei krt. 98, Debrecen H-4012 Hungary

Tel: +36 (30) 412-2011

Mobile: +36 (52) 482-281

E-mail: pfliegler@jaguar.dote.hu

There are now four labs in the world who are providing very highly reliable testing and who can find even very rare mutations. For people with no clear clinical diagnosis who are the first in their family, it is preferable to go to one of these testing labs:

Europe:: Dr. Alessandra Murgia, Pediatrics; University of Padua; Via Giustiniani 3, Padova 35128 Italy; Tel: +39 (49) 821-3512; Fax: +39 (49) 821-3502; E-mail: alessm@child.pedi.unipd.it

North America:: Catherine Stolle, Ph.D., FACMG
Molecular Genetics Laboratory
The Children's Hospital of Philadelphia
Abramson Research Center 1106F
34th & Civic Center Boulevard
Philadelphia, PA 19104
Phone: +1 215 590-8736, +1 800 669-2172
Fax: +1 215 590-2156
E-Mail: stolle@email.chop.edu

South America:: J. C. Casali da Rocha, Oncology; Ludwig Inst for Cancer Research; Rua Prof. A. Prudente 109-4 andar; São Paulo - SP 01509-000 Brazil; Tel: +55 (11) 2704922; Fax: +55 (11) 270-7001; E-mail: jccrocha@ludwig.org.br

Australia:: Dr. Michael Buckley; Molecular & Cytogenetics Unit; Prince of Wales Hospital; Randwick, NSW 2031 Australia; Tel: +61 (2) 9382 9164; Fax: +61 (2) 9382 9116; E-mail: m.buckley@unsw.edu.au; Monica Tucker, genetic couns, +61 (2) 9382-2609

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.