The Transverse Myelitis Association Serves on the Christopher Reeve Paralysis Foundation Paralysis Task Force

The Transverse Myelitis Association was invited to serve on The Paralysis Task Force by the Christopher Reeve Paralysis Foundation (CRPF). The Christopher and Dana Reeve Paralysis Resource Center, funded by the Centers for Disease Control and Prevention (CDC), has established a broad-based Task Force of collaborating partners and stakeholders to create a Public Health Action Plan on Paralysis.

The aims of the plan are to:

• Improve the health and quality of life for persons living with paralysis;
• Raise awareness among the public and national leaders about the conditions and diagnoses that result in paralysis and the secondary complications and environmental barriers associated with paralysis;
• Foster greater understanding of how a public health plan can improve the physical, psychological, social and economic well-being for Americans living with paralysis, their family members and caregivers;
• Promote the appropriate management of paralysis and its secondary complications across the lifespan of the individual living with paralysis, including interventions to minimize pain and reduce psychosocial distress;
• Support individuals with paralysis in accessing the family, peer, and community resources;
• Translate research results into effective clinical practice in community settings; and
• Present relevant public health strategies on paralysis for utilization by states, non-profits and other disability organizations.

The Paralysis Task Force Workshop was held from September 26 th to 28 th, 2004 in Washington DC. The goal of the workshop was to engage in a collaborative process to create bold initiatives which would serve as the foundation of a Public Health Action Plan on Paralysis. The CRPF assembled a task force comprised of public health experts, disability specialists, as well as a broad-based coalition of advocacy organizations representing persons with paralysis resulting from spinal cord injury, spinal cord diseases and birth defects.

The following organizations participated in the Paralysis Task Force Workshop:

In addition to the approximately 45 participants at the workshop, the CRPF was well represented by their staff from New Jersey, Washington DC and California. Those in attendance from the CRPF included, Dana Reeve, Director and Chair of the Quality of Life Committee of the Christopher Reeve Paralysis Foundation, Kathy Lewis, President and CEO, CRPF, Michael Manganiello, Senior Vice President, CRPF and Joseph Canose, Director, The Christopher and Dana Reeve Paralysis Resource Center.

Of the 45 participants, the TM and neuroimmunologic disorder community was very well represented by Dr. Douglas Kerr from the Johns Hopkins TM Center and Project Restore, Cody and Shelley Unser from the Firststep Foundation, and Pauline and Sandy Siegel from The Transverse Myelitis Association. The Task Force members engaged in a two-day process of guided discussion and brainstorming focused on a comprehensive and thorough analysis of health and quality of life issues surrounding paralysis. This process was managed by professional facilitators who elicited a tremendous amount of information and stimulated creative ideas from an amazingly broad range of experts. The participants possessed extensive experience and represented advocacy organizations, government agencies, academic institutions, rehabilitation centers, medical centers, and research facilities.

At the conclusion of the workshop, the participants presented a list of recommendations and each accompanied with a set of specific actions to implement the identified public health policy initiatives. The CRPF is in the process of developing a white paper which will describe the results that were produced from the workshop. Each of the workshop participants will review and comment on the white paper before the final document is completed. The final work will be the Public Health Action Plan on Paralysis. This document will be signed by the participating organizations and will serve to guide the Centers for Disease Control and Prevention (CDC) and the collaborating partners and stakeholders to promote goals to improve the health and quality of life for persons living with paralysis.

October 15, 2004

It is with the deepest sadness that we heard of Christopher Reeve’s passing. Christopher Reeve was a wonderful advocate for our community. He created tremendous awareness of our issues in the general public and was a voice of reason before legislators and private and public organizations. He brought intelligence, diplomacy and dignity to his positions on some very complicated and sensitive issues.

Pauline and I had the opportunity to meet Dana Reeve during the Paralysis Task Force meeting in Washington DC. We were so impressed with her dedication and loyalty to her husband and to her family. It was very obvious from the way she talked about their relationship that the challenges they experienced after Christopher’s injury intensified their family bonds and strengthened their love and devotion as a couple. Pauline and I understood this experience very well.

The world has lost a wonderful actor and director. The paralysis community has lost a wonderful advocate. Dana and the Reeve children have lost a wonderful husband and father. We are all so sorry for this tragic loss. We hope and pray that his memory should serve as a blessing for Dana and his family and for all of us.

And the work continues, as Christopher Reeve would have wanted it to continue. The first draft of the Paralysis Health Action Plan will be written and ready for review by early November. We recently received a communication from the CRPF staff. As they wrote in their message to all of us on the Paralysis Task Force, “Now, more than ever, we wish to live up to the legacy that Christopher Reeve left to the world.”