Happy 5th Anniversary, VHL Family Alliance

Peggy M. and Joyce Graff at the Memphis meeting.

Don and I have been reflecting back on the past five years on our involvement in the VHL Family Alliance. This is a very special event for all of us and a perfect opportunity to share what it has meant to us personally.

I was invited to a VHL Family Alliance support meeting in June of 1993. The invitation came from Joyce Graff and the meeting was to be held at her parents’ home in Memphis, Tennessee. Our daughter and my sister from Arkansas also received invitations, but would not attend unless I agreed to go. My husband, Don, expressed strongly his concerns that this meeting might not be a good idea. He felt (like others who are reluctant to attend a support meeting) that this might not be a positive experience. He was and is concerned that I maintain as positive an attitude as possible and live every day to its fullest. He felt being among other VHL patients would only lead to negative thoughts about living with VHL. As I searched for the reasons to meet Joyce, I realized that I would not be satisfied until I knew what the goals of the VHL Family Alliance would be. My family felt isolated having a disease that most physicians had never seen. Meeting with Joyce, her family and friends that day in June changed my life, strengthened my faith, and gave me hope for the future.

Immediately on my return from Memphis, Don saw a new commitment in my life and he joined in the enthusiasm I felt, knowing that we had finally found someone with the leadership, knowledge and initiative to help VHL patients and families to deal with VHL. Words can not express how much Don and I appreciate the energy that Joyce has given to keep the organization alive. Thank you, Joyce, from all of us!

As Chair of our 800 Line Committee, I, along with Altheada J., Barbara R., and Eva L., have had the pleasure of talking with hundreds of individuals about VHL. We feel it is one of the most rewarding aspects of our involvement with the VHL Family Alliance. For many callers, it is their first contact with another person with VHL. Our hearts have been touched over and over again. It is overwhelming to know that you have been part of saving an individual from a total nephrectomy and dialysis by recommending a second opinion. The VHL Family Alliance has developed a long reaching world-wide support mechanism through our Medical Advisory Board, major medical facilities as well as the National Institutes of Health to bring VHL from a paragraph in a medical textbook to a manageable and treatable condition.

The VHL Family Alliance has published a VHL Handbook that is so thorough it is used as a resource for medical teams and health maintenance organizations worldwide.

We have formed 28 State Chapters and have seen caring and dedicated volunteers give tremendous energy and time to the goal of improving diagnosis, treatment and quality of life for all of us with VHL. We also have 22 Clinical Care Centers, domestic and international, to better serve patients in the coordination of their medical professionals to provide the necessary screening needed for treatment of VHL. Sixteen international Affiliate Chapters have been formed to make patient knowledge and care a worldwide effort.

The VHL Family Alliance has been able to fund three impressive research teams in the past two years to work toward our goal of finding a way to control VHL. We will continue to focus our efforts to fund research until that breakthrough becomes a reality. All of these accomplishments could not have happened without each volunteer on the team doing their part. It has truly been a team effort. We have grown from three families to over seven thousand people in five years. We are as excited today as we were five years ago when we said "Yes, we want to help."

The VHLFA support system is growing stronger every day and we are making a difference! Happy Anniversary, VHL Family Alliance!!