I was privileged to attend the 25th Annual VHL Family Conference in Colorado this past weekend. It was a wonderful meeting. Congratulations to the VHL Alliance leadership and staff, and especially to Dr. Nicholas Cost and his colleagues at the University of Colorado. Among other things, they presented “Case Studies” describing the experiences of two patients – one an adult and one a 5-year-old – bringing symptoms to the hospital which resulted in diagnoses of VHL. The teamwork they displayed, in addition to their individual expertise, was particularly impressive.
How wonderful for me to see how far we have come as a community since our first family meeting in 1994 at the Embassy Suites in Kansas City! I have posted the newsletter where we reported that meeting – 130 people from 30 states and two foreign countries. Remember that there was no other source of information in those days – no handbook, no guidelines — no internet! –– and very few doctors even knew about VHL in their own specialty field, much less the full spectrum of what VHL entailed.
One nurse from NIH commented to me that there were more people with VHL in that room (76) than were reported in most of the articles in the medical literature (16 was a big number then). We drew people together at these meetings to learn from each other and from specialists what we might be able to do to manage VHL. See especially pages 8 and 9 of the newsletter. See too the announcement (page 1) of the start of the Clinical Care Centers program, and the introduction (page 10) of the notion of NOT operating on small kidney tumors — a notion that was later proven and published by Dr. Linehan and colleagues at the NIH, and the “3-centimeter rule” is now in use for all clear cell renal cell carcinoma. Partnership is what we have always been about.
At that first meeting in 1994, we met other people with VHL for the first time. We bonded quickly, “related” by having a pesky gene in common. Many of those people are still fast friends. In 1994, the information we shared was primarily about survival. We dreamed of a drug one day, but meanwhile there were a lot of people dealing with a lot of tumors. We worked closely with wonderful medical advisors to work out strategies for survival and to improve quality of life.
This weekend in Colorado, the meeting had great medical content of course, but in addition we were able to focus on emotional needs, on empowering young people to manage their own health, and on raising money and launching clinical trials. We have come a long way, and are just now entering a time when we may have some drugs to assist. It’s a very exciting time.
I applaud the VHLA, and I applaud everyone in our community who together have made all this progress happen. The organization continues to grow, strengthen and mature. We all need to remember that we got here through cooperation among families and medical professionals – sharing our experiences and our expertise, our hypotheses and conjectures, and having the courage to be pioneers in unknown territory.
And there is more to be done. Please continue to be part of this essential partnership, this essential community. Please participate in MyVHL and add your own experiences to this important collection of data that will help the doctors test and prove new ways to manage – and ultimately cure – VHL.
Much love to all,
Joyce Graff
Founder, VHL Alliance, January 1993
Retired from leading VHLA, January 2013
VHL Family Forum, June 1994
The pictures had to be pasted on in those days, so they are not in the file.
