Susan Warnick, Reisterstown, Maryland

Founder, Co-Chair 1993-95

Chairman of the Board 1995-96

I have been dealing with VHL since my husband Craig's diagnosis 19 years ago.   Engaged at the time, VHL totally changed both our lives.  Shortly after Craig's diagnosis I attended nursing school and beegan working in pediatric neurology and neurosurgery at Johns Hopkins Hospital in Baltimore.  I continue to work with children in neurologic rehabilitation at Kennedy Krieger Institute.

Over the years I became aware of the problems faced by VHL families.  I was committed to establishing an organization for VHL patients and their families, but never had the time with the frequent surgeries in our own family.  I have been delighted to join forces with other VHL families with the same dream and form the VHL Family Alliance.   Craig and I are featured in Dr. Ben Carson's autobiography, Gifted Hands.  A piece of our story is in the September issue.  We have one child, Chloe, who has brought us tremendous joy and renewed strength in our battle with VHL.

Originally published December 1993 (VHLFF 1:4).

Subsequent articles:  Keeping Faith