Meet Fred Wahl, Leader of NAAF’s Longest-Running Support Group

Jan 28, 2019

For over twenty years NAAF’s original support group, which still meets regularly in San Francisco, has been helmed by Fred Wahl. Over the years, he has been joined by co-leaders Annette Perot and Matt Kelley. Here, Fred tells his story, as well as the story of this group and a bit of the early history of NAAF.

My alopecia areata began when I was age 11. This was in the dark ages of medical information and support was not even thought of — not for another 20 years. In 1981 Ashely Siegel was struggling with her hair loss and received sound advice to reach out to others going through the same experience. Ashely did it in a big way! She made an appearance on a local morning TV show and caught the attention of Dr. Vera H. Price, a dermatologist who had her medical practice at Kaiser Hospital in San Francisco. Their encounter resulted in the first San Francisco Support Group meeting of 13 people — and Dr. Price suggested they begin a larger group to be called the National Alopecia Areata Foundation. The grand vision of a “National” organization was light years beyond that one local gathering, but it was not long before the organization was underway and the term “National” was true. 

I had spent over 20 years with patchy alopecia areata, and for most of those years I felt as if my being were enveloped by a thick San Francisco fog! It was my good fortune when I lost all my hair in 1978; I began to be open about it and found my way. Ashely spoke to me from the pages of the People magazine in which she was featured late in 1984. She and the San Francisco Support Group reached out and led me further out of the fog. I did not hesitate to call and find out more about the support offered in San Francisco. I attended the next meeting but still not comfortable enough to discuss my own alopecia. That first night is still vivid; I knew then that support from others was the key to coping and that I would learn how to return that support so others would not have to go through alopecia areata alone.

I became a support group leader — and our current group is very fortunate to have the leadership of two others.

Annette Perot was involved in those first years with her son, Travis, who lost all of his hair when he was just a few years old. Mom was very good at not giving Travis any breaks for being a bald kid while building his self-confidence. She kept him involved with the group and with NAAF activities, and she listened to him when he said that his treatments were not working and were a waste of time. Annette went on to be “Conference Mom” to many children and teens by organizing activities and watching over Travis and peers at the NAAF conferences. Little did she know that her own alopecia areata would go from occasional small spots to total hair loss. It was a struggle at first, but she knew what she had to do: attend the San Francisco Support Group and became a Support Group Leader.
Matt Kelly was blindsided by rapid hair loss at age 35, and he focused first on finding the cure that he knew was out there somewhere. It was not to be found — at least not during the time he was searching. With recent research breakthroughs, who knows what the future has in store? Matt’s career changed during the years of struggle and learning to cope; he reflected on his work situation and desired to do more for himself and others. So he went from owning sports memorabilia stores to returning to Stanford University and becoming a marriage and family therapist. He now focuses on helping people with alopecia areata understand the process of grief and loss at our support group meetings and at the NAAF Conferences.

Each one of us finds great value in giving back to others by offering insight based on our own experiences. Others helped us and we are rewarded as we return the favor.
Our group has also been very social over the years. A very early tradition has been to casually meet for dinner before each meeting. We have met at the same pizza parlor for about 25 years! We also have a holiday dinner, organized by Jeff Goins, and we see many members there who aren’t regulars at our meetings; it is something like a yearly family reunion. 

There's something almost magical about providing support for something I am so intimately involved in. When singular moments of heartfelt connections occur, there is a tremendous feeling of satisfaction. Those singular moments define the reason for giving and sharing. Usually, the focus is on those who have alopecia areata, but we are also there for those who wish to be of support. For example, during one couple’s first visit to our group, the husband sat without saying anything, but at their second meeting, the husband sincerely thanked our group for helping to change his attitude. He had been less than sympathetic with his wife, feeling that she had overreacted to this simple matter of losing hair. Hearing the difficulties of others helped him realize that he had blocked out the impact alopecia areata had on his wife. He was beyond his denial and ready to support his wife.

Funding Research Toward a Treatment
Forging the Future: 2018 Alopecia Areata Research Summit Summary Report