The Transverse Myelitis Association Named Recipient of Christopher Reeve Paralysis Foundation Quality of Life Grant
The Christopher Reeve Paralysis Foundation (CRPF) announced today that The Transverse Myelitis Association has been awarded a $10,000 Quality of Life Grant. The Transverse Myelitis Association and the Johns Hopkins Transverse Myelitis Center are co-sponsoring the Rare Neuroimmunologic Disorders Symposium. The Health Promotion Quality of Life grant will be used to support this symposium.
Columbus, OH (PRWEB) August 7, 2004 — The Christopher Reeve Paralysis Foundation (CRPF) announced today that The Transverse Myelitis Association has been awarded a $10,000 Quality of Life Grant. CRPF awarded a total of $779,321 in Quality of Life Grants to 126 organizations nationwide as part of its 2004 first funding cycle of the Quality of Life Program.
The Quality of Life grants program was conceived in 1999 by Dana Reeve. Reeve, Director of the Christopher Reeve Paralysis Foundation and founder of the Christopher and Dana Reeve Paralysis Resource Center, started the program with the goal of helping people living with disabilities in the ‘here and now.’ Grants are awarded to programs or projects that improve the well-being of people living with paralysis, particularly spinal cord injuries. Funding is awarded twice annually in thirteen categories, including: accessibility, advocacy, arts, assistive technology, children, counseling, education, employment, health promotion, independent living, practical services, sports and recreation, and therapeutic riding.
“For the first time in the history of this program, we have awarded over $775,000 in one cycle which will directly improve the quality of life for not only those living with disabilities, but their loved ones and caregivers as well,” said Dana Reeve. “When we first launched this program, I was thrilled to be able to award 20 nonprofit organizations. I never imagined that within five years we would be able to fund over 125 groups.”
Health Promotion grants, a special category of Quality of Life grants, are funded through a cooperative agreement with the Centers for Disease Control and Prevention. Funding is awarded to non-profit organizations that address the needs of people living with paralysis caused by spinal cord injuries and other injuries, diseases and birth conditions that result in paralysis. Health promotion grants strive to remove societal and environmental barriers that limit the abilities of individuals living with paralysis to participate in life activities. Participation in these activities improves physical and emotional health and prevents secondary conditions for persons living with paralysis. Health promotion grants totaled $386,421 and were awarded to 50 organizations.
The Transverse Myelitis Association and the Johns Hopkins Transverse Myelitis Center are co-sponsoring the Rare Neuroimmunologic Disorders Symposium. The Health Promotion Quality of Life grant will be used to support this symposium. The primary goal of the symposium is to bring together patients with rare neuroimmunologic disorders, professionals who provide medical treatment and care to this population, and basic and clinical scientists who specialize in research on these disorders. The symposium will provide a unique approach and an exceptional opportunity to foster communication and the sharing of information between the significant members of the neuroimmunologic community.
According to Dr. Siegel, President of The Transverse Myelitis Association, “There are considerable benefits to be derived from the synergies of bringing together these groups who possess a variety of perspectives and experiences but who share very fundamental and common goals: a better understanding of these rare disorders, the improved quality of life for this community of people, improved treatments for these disorders, and ultimately a cure for these neuroimmunologic disorders. This symposium represents a major step in achieving all of these goals.”
Transverse Myelitis is a rare neurological disorder that is part of a spectrum of neuroimmunologic diseases of the Central Nervous System. Other disorders in this spectrum include, Acute Disseminated Encephalomyelitis (ADEM), Optic Neuritis, and Neuromyelitis Optica (Devic’s disease). The membership of The Transverse Myelitis Association includes persons with all of these disorders, their family members and caregivers and the medical professionals who treat people with these disorders. The TMA has more than 5000 members from every state in the United States and from more than 80 countries around the world.
The Transverse Myelitis Association was established in 1994 as an organization dedicated to advocacy for those who have these rare neuroimmunologic diseases.
The Transverse Myelitis Association facilitates support and networking opportunities amongst families; provides educational information; functions as a clearinghouse for articles and research literature; and investigates, advocates for and supports research and innovative treatment efforts.
The TMA publishes a newsletter for members twice a year, which contains articles by physicians and health care providers. There are also articles written by people with the rare neuroimmunologic disorders. A membership directory is published and distributed annually. The TMA assists in the development of local support groups and is involved in various fund-raising efforts, such as Reading for Rachel, to raise awareness and funds for research. The TMA supports and conducts various symposiums and workshops involving both professionals and patients for the exchange of information regarding research and treatment strategies for persons with the rare neuroimmunologic disorders of the central nervous system.
Dr. Siegel is a resident of Columbus, Ohio. His wife, Pauline, contracted TM in 1994; she was totally paralyzed from the waist down from an inflammatory attack to her spinal cord. She has experienced a moderate recovery from the symptoms of TM. Pauline is a second grade teacher in the Worthington School District.
The Christopher Reeve Paralysis Foundation (CRPF) is committed to funding research that develops treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders. The Foundation also vigorously works to improve the quality of life for people living with disabilities through its grants program, paralysis resource center, advocacy efforts.
For more information about the CRPF Quality of Life Program or the grant application process, please contact the Quality of Life department at (973)467-8270, ext. 211 or visit the website at www.ChristopherReeve.org
For more information about TM and the TMA, please call Sanford J. Siegel at (614)766-1806 or visit our website at www.myelitis.org
Sanford Siegel
TRANSVERSE MYELITIS ASSOCIATION
(614) 766-1806
