An Open Letter Nominating Dr. Charles E. Levy for the American Academy of Physical Medicine and Rehabilitation Distinguished Public Service Award

The Officers and Board of The Transverse Myelitis Association are nominating Charles E. Levy, M.D. for the American Academy of Physical Medicine and Rehabilitation Distinguished Public Service Award.  Dr. Levy is the Chief, Physical Medicine and Rehabilitation of the North Florida/South Georgia Veterans Health Service.  We are making this nomination to recognize the exceptional contributions Dr. Levy has made to our organization and to the very special people of our community. 

My wife, Pauline, got transverse myelitis in 1994.  Within a matter of seconds, she was completely paralyzed from the waist down.  TM is not very well understood; in 1994, there was very little in the medical literature about TM.  There was no information available for the patient population and there was no support network of any kind.  Working with a family from Tacoma, Washington whose 18 month old daughter got TM, we started The Transverse Myelitis Association.  We began doing this work shortly after Pauline’s attack.  Our work proceeded very slowly.  The internet was not widely used and there was not an easy way for people with the TM diagnosis to find us.  None of us involved in this work had medical backgrounds.  I have a PhD in Cultural Anthropology.  And none of us had any experience in doing this type of support work.  Additionally, there were no physicians anywhere in the world that specialized in the treatment of TM, and there was no research being done on this neuroimmunologic disorder. 

Pauline was admitted to Dodd Hall, at The Ohio State University Medical Center, a week after her diagnosis.  She did extensive rehabilitation at Dodd for almost two months as an in-patient.  It was during this time that Pauline met Dr. Levy in the wheelchair clinic.  Pauline was skeptical that Dr. Levy could serve her, but he won her over, and soon she was wheeling with the best of them.  As her recovery slowly progressed and limited walking became feasible, Dr. Levy performed a gait evaluation for Pauline and helped provide her with an AFO and special grip canes. 

As Dr. Levy got to know us better, he learned about our efforts to start a support network for people with TM.  Dr. Levy was tremendously supportive of our work and approached us about starting a medical advisory board.  We discussed the importance of professional medical guidance in our work, which we totally lacked to this point in our efforts.  Dr. Levy volunteered to start the medical advisory board and to serve as our first physician on the board.  He followed up these initial discussions by recruiting other physicians such as Dr. D. Joanne Lynn, M.D. who also serves on our Medical Advisory Board.  Dr. Lynn is an Associate Professor of Neurology and the Director of the MS Center at The Ohio State University. 

In October 1997, Dr. Levy and Dr. Lynn published an article for The Transverse Myelitis Association Newsletter focused on the symptoms, causes and diagnosis of TM and enumerated the treatment strategies for managing the many difficult and complex symptoms of TM.  The article represented a courageous effort to communicate critical information to the people with this rare disorder.  It was absolutely courageous, because they had so little information in the medical literature upon which to base their explanations and guidance.  This article was so important for our community that it remains a cornerstone piece of the information we send to every recently diagnosed person who signs up for membership in the Association.  Dr. Levy and Dr. Lynn’s article also represented the first of many physician articles that are published in our newsletters and journals.  They set the framework and the high level of expectations that we developed for the professional information that we provide to our members in our publications.  Our publications are not only read by people with these disorders and their family members; our readership includes the neuroimmunologists, physiatrists and other specialists who provide clinical care and conduct research on these rare disorders.

In the winter 1997, Dr. Levy approached the officers of the TMA and told us that he was organizing a conference for patients with another rare disorder, fibrodysplasia ossificans progressiva.  Dr. Levy, who was very active and an advocate in the FOP community, had invited the world experts in FOP to present in Columbus to the membership of the FOP.  Dr. Levy discussed with us the importance of this type of educational conference and support opportunity in the rare disease community.  He invited the TMA to participate in this conference.  As we were a fledgling organization with minimal resources, Dr. Levy entirely funded the TMA participation in the conference. 

The International FOP rehabilitation conference took place on May 7 -10, 1998 in Columbus, Ohio.  Dr. Levy brought the officers of the TMA together for the first time at this conference.  There were other members from the TMA who attended this conference, as well.  For almost every person with TM, this conference represented the first time they had met another person with TM.  One woman had TM for more than 40 years and she was meeting another person with her disorder for the very first time!  Although this may not seem meaningful to the casual reader, this was a very profound moment for us all.  The officers of the Association also had the opportunity to meet with Dr. Lynn for the first time.  Dr. Levy taught us so much at this meeting.  It was from this watershed experience that the TMA decided to sponsor and hold our own symposia for our community.

The TMA held its first symposium in Seattle in July 1999.  Dr. Levy helped us organize the symposium and made presentations along with physicians from across the country.  More than 200 members from our community attended this first meeting of the TMA.  Our Medical Advisory Board has since grown to nine members.  We have both pediatric and adult specialists in neuroimmunology and in physical and rehabilitative medicine.  Dr. Douglas A. Kerr started a Center of Excellence in TM at Johns Hopkins Medical Center shortly after attending our symposium in Seattle in 1999.  Dr. Kerr and Dr. Benjamin Greenberg are Co-directors of the TM Center and both also serve on our medical advisory board.

Dr. Charles Levy has been an integral participant in all of our symposia.  These meetings have since been held in 2001, 2004 and 2006.  We have another symposium scheduled this summer in Seattle.  In July 2002, the TMA sponsored a Children’s and Family Workshop.  Children as young as 5 months old get TM.  The workshop provided four days of physician education to the parents while the older children were provided an adaptive recreation adventure and the young children were taken on fieldtrips to the Columbus Zoo and a children’s science museum.  This workshop was offered at no cost to the families.  As the TMA has very limited resources, Dr. Levy and the other physicians who attended and presented at the workshop funded their own travel.  Most of the physicians brought their own families and many family members volunteered to serve as companions for the adaptive recreation adventure and fieldtrips.

During the 2006 symposium in Baltimore, Dr. Levy organized a gait and orthotics clinic for the members who attended.  He brought together a group of physical and rehabilitation medicine physicians and orthotics specialists who participated in an afternoon clinic.  Evaluations were offered on an individual basis and each participant was provided specific recommendations which they could take home to their physicians for discussion.  All of the participants were able to observe each of the evaluations and thus learned about how an evaluation was performed and developed some sense of expectation about what they should receive from their own physician.  We received very high praise and gratitude from our members for Dr. Levy’s effort.  Many people in our community have a difficult time finding this type of evaluation.  There is no concentration of TM anywhere in the country.  Many of our members live in rural areas or small communities away from large medical centers where medical care for a rare disorder is often difficult to find.

Dr. Levy is committed to raising awareness about the rare neuroimmunologic disorders and in supporting the education of medical specialists about these disorders.  Dr. Levy spearheaded the effort to raise awareness of rare neuroimmunologic disorders at the Association of Academic Physiatrists’ annual meeting held in Anaheim in February 2008.  Dr. Douglas Kerr and Dr. Adam Kaplin from the Johns Hopkins TM Center joined Dr. Levy as presenters to the AAP.  Dr. Levy also created the opportunity for the TMA to hold a one-day symposium in Anaheim on Saturday, February 23rd.  Dr. Levy, Dr. Kerr and Dr. Kaplin were involved in presenting the course at the AAPM&R meeting.  Dr. Pidcock also attended these meetings; he is a pediatric physiatrist, and all four physicians also serve on our medical advisory board.  Invitations were sent to our California TM Support Group, and 100 people attended a one-day symposium offered by these four wonderful doctors about TM, acute disseminated encephalomyelitis (ADEM), neuromyelitis optica (NMO), and optic neuritis (ON), and symptom management strategies. 

Dr. Levy has brought The Transverse Myelitis Association leadership, compassion, exceptional medical guidance and organizational support from almost our inception.  Without his support and guidance, we would not have become a professional and internationally recognized organization.  Dr. Levy has provided so many critical opportunities for our Association.  When Dr. Levy became involved in the TMA, we had fewer than 200 members.  Today, we have more than 6300 members, including the medical specialists who focus on the treatment and research on the neuroimmunologic disorders of the central nervous system.  Our membership grows by approximately 40 – 60 people per month.  The TMA advocates for people who have TM, neuromyelitis optica, acute disseminated encephalomyelitis and optic neuritis.  Our members are from every state in the US and from more than 80 countries around the world.  We have support groups across the US and in Brazil, Colombia, England, Scotland, Ireland, France, Germany-Austria, Italy, Romania, Denmark, Sweden, Australia, New Zealand, South Africa, Ghana, India, the Philippines and Sri Lanka.  The TMA has no employees.  All of the work that is done for the Association is done by volunteers, including all of the officers and all of the support group leaders.  There are no membership fees and the TMA receives no institutional support.  We depend on the generous and voluntary contributions of our members. 

What I have described in this letter does not touch on Dr. Levy’s work with people with fibrodysplasia ossificans progressiva, his research on stroke recovery including fMRI, his research on power assist wheelchairs, his medical work in Africa, his work in shaping Medicare and the VA policy regarding prosthetics and orthotics and wheelchairs, or his testimony before Congress concerning tele-rehabilitation.  Dr. Levy is now focusing on helping combat veterans with mild traumatic brain injuries, and is using telemedicine/telerehabilitation for those with cognitive and emotional impairments.  I know most intimately the transformative work he has provided to The Transverse Myelitis Association. 

I would be most grateful for your careful consideration of our nomination of Charles E. Levy for the Distinguished Public Service Award.  He is most deserving of this consideration. 

Sincerely,
Sanford J. Siegel