We Have Lost a Dear Friend

Remembering Michael Capen

The Siegel Rare Neuroimmune Association (SRNA) has lost a dear friend. We are saddened to announce that Michael Capen passed away last week. As many of you know, Michael was Debbie Capen’s husband. Debbie is a member of the Board of Directors of SRNA, the Secretary of the Board, and Executive Committee member of SRNA and has been with the organization from the beginning. Michael had also been involved with our work from the beginning, and many of our community members have met Michael at SRNA events like camp and our symposia.

As Debbie describes in her Hope Ambassador story, prior to her life with transverse myelitis (TM), she and Michael led a very active and hectic lifestyle. They traveled often for their flooring business and enjoyed adventuring, including even riding around on motorcycles. In December 1996, during one of their cross-country travels, Debbie suddenly lost the ability to stand and walk while waiting for a flight at the airport in Minneapolis. Michael’s goal was to get her to the emergency room as quickly as possible. Debbie was eventually diagnosed with TM. After her diagnosis, she typed the words “transverse myelitis” into her new computer and met Jim Lubin and the transverse myelitis internet club. She then flew to Seattle to meet Deanne Gilmur and, later that year, met Sandy and Pauline. This then led to her appointment as Secretary of The Transverse Myelitis Association (now SRNA) in 1997. Throughout all of this, Michael has been by Debbie’s side. They always attended our yearly summer camp for children with these disorders, and often drove families to and from the airport. Debbie and Michael were also at our most recent symposium in Columbus, Ohio.

Michael was an anchor for Debbie. Through his support and love for Debbie, he became a foundational member of our community. Michael was a soft-spoken, kind, and caring person. The families loved their time with him at camp. He loved spending time with the children at the fishing pond. He is going to be so missed by all of us.

Our thoughts are with Debbie and their family as they mourn the loss of Michael. In honor of his memory, the Capen family is asking for donations to be made to SRNA.

His memory should be a blessing.