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Dana’s Hopathon
Fundraiser Raises $6100 for The Transverse Myelitis Association
http://spiff.ucsd.edu/Dana/
Dana was a healthy, athletic ten year old girl until July 2001 when she
contracted Transverse Myelitis (TM) and became paralyzed from the waist
down. She came home after a month’s stay at Children’s Hospital
San Diego, uncertain of what the future held for her. Thanks to
caring family, friends, classmates, doctors and therapists, she is
slowly regaining use of her legs.
Dana and her family attended the first-ever Pediatric TM Workshop in
Columbus, Ohio in July 2002. The Workshop was sponsored by The
Transverse Myelitis Association (TMA) and moderated by Douglas Kerr,
M.D., chairman of the Johns Hopkins Transverse Myelitis Center
(JHTMC). The Center is the only one of its kind in the country
dedicated to studying the epidemiology, potential causes and mechanisms
of spinal cord injury in TM. The Workshop allowed Dana’s family
to meet 24 other families who had children with the illness, and
learned that TM is a rare disease, striking 1 in a million people, and
of these, approximately 10% are pediatric cases. The illness is
often misdiagnosed or there is a delay in diagnosis – with dire
consequences for the patient. Dana’s parents are both pediatric
physicians and were concerned that there were perhaps missed
opportunities for better outcomes due to lack of awareness by treating
medical personnel. They were also concerned that many families
were not receiving well-coordinated rehabilitation services, and
realized that education of the public as well as medical personnel
about the TMA and the Johns Hopkins TM Center is vitally important
work. Physicians who access the JHTMC website
(http://www.hopkinsmedicine.org/jhtmc/) will find detailed information
to assist them in the diagnosis and treatment of a patient who has
non-traumatic spinal cord injury, and there is good general information
for non-physicians as well.
There is virtually no research or support funding for rare diseases
like TM from the federal or state governments, and the TMA receives
support only through donations of its members (there is no membership
fee). The physicians, counselors and every officer of the TMA are
volunteering their time and services to help educate patients,
caretakers and physicians. Although there is no staff salary
overhead, the costs to maintain the TMA are significant – the costs of
publishing a biennial newsletter containing current literature and
articles written by the medical board, along with office supplies and
mailings must come from donations.
Dana attends physical therapy twice weekly, and was learning how to hop
and jump over a rope. This relatively recent development was the
basis for a fund-raiser; the Mathewson family counted the number of
consecutive hops Dana could make, once a day, for one month.
Pledges per hop or fixed donations were collected, with all proceeds
going to the TMA. The fundraiser was extremely successful, with
Dana accomplishing 186 hops and raising more than $6,100. These
funds were applied to the Association’s general fund for the purpose of
printing and mailing the TMA newsletters and other educational
materials, plus maintaining the website.
Prior to this event, Arlene considered herself a very reluctant
fundraiser, with asking anyone for money an onerous task. She was
amazed at the generosity of family and friends. The fundraiser
proved attractive to everyone because it was based on Dana’s daily
efforts, and her progress could be followed on the fundraiser website,
adding excitement for all. The Mathewson Family hopes that other
members entertain the possibility of a fundraiser of their own for the
TMA and help raise awareness of the disease that affects all our
families.
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