Hi Jim,
What great news. I checked out the website for TM and I had no idea
about the information they had about ADEM. And that the two diseases were
so closely linked. I guess you and I have more in common than I
thought. I think I when I get some extra time, I will join. I
noticed that you guys have get togethers in DC. That is only 2 and 1/2
hours from me and that sort of driving is not that big of a deal for me.
Well it wasn't before I got sick. When I get driving and more comfortable
that could be something that I could do.
Stacy
"People who hate you do not win unless you hate them. Then you destroy
yourself"
----- Original Message -----
Sent: Thursday, August 05, 2004 6:33
PM
Subject: [QUAD-L] TMA Receives Quality of
Life Grant from CRPF
FOR IMMEDIATE RELEASE
August 4, 2004
The Transverse
Myelitis Association Named Recipient of Christopher Reeve
Paralysis
Foundation Quality of Life Grant
Columbus, Ohio - 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
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