Introducing the Board of Directors, 1993

Lois Erickson, Bloomington, Minnesota 

I am married and have two children: Carmen and Chad. I have VHL and so does my son Chad. I work at Knutson Mortage Corporation in the Master Servicing Department. I have many hobbies and think of myself as a healthy person. My story is in the June issue.

I am delighted to be a member of the VHL Family Alliance, and think the organization has given me a purpose in life. I don't want anyone to be as uninformed as our family was for 40 years. I will do my best to talk about VHL to everyone who will listen. I am thankful for each day that I feel well and can continue going 100 miles per hour!

With Cindy Dearing of Missouri I will be chairing our Annual Meeting in Kansas next spring. I look forward to meeting all of you there!

Joyce Graff, Brookline, Massachusetts

I work for Digital Equipment Corporation, as a software product manager with Electronic Mail. I am a past Director of the National Braille Association and the Massachusetts Association for the Blind. I am a member of several community groups and industry organizations in telecommunications.

I signed on for life with VHL in 1961, when I became engaged to Frank. Frank's outstanding academic career and success as a history professor in the face of the challenges VHL and blindness threw his way, were inspiring to those of us who were closest to him. It was his wish that we learn as much as possible from his experiences so that the next generation would stay healthier.

I am delighted to work with the Alliance to make the road easier for our son, and for all of us who live with VHL. My son and I are enormously grateful to our many new friends in our "other family," and to the many physicians who give so generously of their time to help us with the newsletter, handbook, and other materials.

Peggy Graham, Warren, Michigan

I am a nurse in maternal and child health at the Bi-County Community Hospital in Warren, Michigan. I am a lactation consultant and coordinate teaching programs for new mothers, and the nurses who work with them. I am also a busy mother and grandmother.

My family has had a crash course in VHL, beginning only five years ago. Since then, in addition to adrenal involvement, we have had brain and spinal aspects as well. Our adrenal story is in this issue. It is difficult managing the health care of so many people all at the same time, but somehow we manage it all! We are delighted to have found so many other wonderful families. Together, we will overcome VHL.

Hazel Murfitt, Ely, Cambridgeshire, England

I am a wife and mother of people with VHL, with more than twenty years of brain, spinal, kidney, and pancreas involvement. Our story is in the September issue.

Since early in 1993, when I decided to start a contact group for VHL patients and their relatives, I have taken a number of courses to improve my skills in helping others with this challenging disease. Since then we have been joined by an established group previously coordinated by Mr. Victor M. in Wales. While we do not have group meetings here, I am available by telephone 24-hours a day for VHL families who need to talk.

Our family is very active in spreading the word about VHL in the press in England. Ken and I were honored to open the Royal Flower Show at Hampton Court in June.

Susan Warnick, Reisterstown, Maryland

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 began 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.

Darlene Young, Plainville, Massachusetts

I am the Administrative Assistant at the Council on Aging in Attleboro, Massachusetts. I am also an elected member of the Housing Authority of the Town of Plainville, where I serve as Treasurer.

My husband, Bill, and one of our two sons have VHL, as do a number of Bill's relatives. We have had brain, eye, kidney, adrenal, and spinal involvement to deal with. Our family has learned over the years to support one another in managing this challenging disease. We are delighted to be able to work with the VHL Family Alliance, sharing what we know, and learning from all of you.

As published in the VHL Family Forum 1:4, December 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.