New Board Members

At the meeting in Kansas City in April the following four people were elected to the Board of Directors. Please support them in their efforts to lead the activities of the Alliance.

Patti Kohlen, California

"I live in the central coast area of California, having moved to the United States from England in 1972. My husband, Ken, teaches architecture at the local university and my daughter, Corinne, attends junior high. I share a second-grade teaching position with another teacher. I also have my own art consulting business, selling the work of many of our local artists and the major art publishers. I am actively involved in our small town, especially in the arts and with our Chamber of Commerce.

"In October 1992, I was diagnosed with VHL shortly after my 44th birthday and 20th wedding anniversary. Within seven months of diagnosis I had three surgeries: spinal, brain, and kidney. I am tremendously pleased to be working with the VHL Family Alliance in the capacity of Public Relations Chair. Through teamwork and networking we can further education, research and support and move towards our goal of making VHL stand for Very Happy Life."

Patti has been a very active member, and since February 1994 has been Chair of the Public Relations Committee. She has undertaken a number of programs to gain name-recognition for Von Hippel-Lindau disease in dignified ways. She has taken courses in Public Relations to enhance her own skills in this area, and prepared the press kit and press releases for the Kansas City meeting.

Peggy M., Mississippi

"I am a Day Care Provider and have been in business for the past fifteen years in our home in Corinth, Mississippi. I really love taking care of children and have found them to provide the best therapy possible when going through the difficult times that VHL sends our way. I am part of four generations of family with VHL, including my mother, two sisters and a brother, daughter, granddaughter and two nephews. We first became aware of VHL in 1962.

"My husband, who has been my life support for 33 years, is right by my side in support of the VHL Family Alliance. We have lived all over these United States from coast to coast and know first hand the difficulties of dealing with minimal medical information, and the need for knowledgeable professional medical attention.

"We are proud to be involved and look forward to being an active part of the VHL Family Alliance, adding our support in any way we can."

Peggy and her husband Don initiated the Mississippi/ West Tennessee Chapter last spring, making it the oldest and one of the most active chapters. Since the geography is very widespread, the chapter operates primarily by telephone and mail. Don handles production of materials for the Alliance. Peggy's knowledge, courage and steady hope are inspiring, and her gentle wisdom is always welcome.

Altheada LaVerne Johnson, Brooklyn, New York

"I am a Registered Dietitian with a master's degree in Clinical Nutrition. In my last job I worked as a Nutritionist in the out-patient department of Newark Beth Israel Medical Center in Newark, New Jersey. There, I did nutrition counseling with pregnant, breast-feeding and post-partum women. I am a member of Delta Sigma Theta Sorority, which focuses on public service and community activities. I am working on forming the New York Chapter of the VHL Family Alliance.

"I have been married to Fred for ten years and my favorite hobbies are crocheting and other needle work. I was diagnosed with VHL in 1988 and have had spinal cord, eye, and brain involvement.

"I was honored to be elected to the Board of Directors of the VHL Family Alliance. The rarity of this disease can make one feel very alone. Having the knowledge and support of the Alliance is very comforting."

As her first major effort to build the New York Chapter, Altheada undertook a mailing to 1000 physicians in the State of New York in the specialties which would treat VHL. As her Board project, she is working on outreach to U.S. minorities affected with VHL.

Thomas D. Rodenberg, Esq., Missouri

"I am an attorney practicing law in the state of Missouri. My mother and several of my brothers and sisters are affected with VHL. I too have been affected. Therefore, my involvement with the Alliance is very personal and heart-felt.

"As an attorney, my interest is in legal issues and insurance issues related to VHL. More specifically, my goals for my time on the Board relate to legislative activity as to health care concerns for persons with VHL and insurance coverage issues for persons who currently have health care coverage. I believe it is very important that persons with VHL demand the coverage which their policies afford and work to see that health care laws protect persons with genetic conditions. As an additional goal while on the Board, I intend to be involved with fund-raising from charitable organizations so that the work of the Alliance can more forward.

"My wife, Kathy, and I life in Independence, Missouri. We have four boys, James (age 5), Benjamin (age 4), Daniel (age 2) and Mark (age 6 months). I look forward to the opportunity to assist the Alliance as a member of the Board."

As published in the VHL Family Forum 2:3, September 1994. 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.