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Corporate Documents
The Spastic Paraplegia Foundation, Inc. (SPF) is a national, not-for-profit, voluntary
organization incorporated in February, 2002. It is the only organization in the
Americas dedicated to Primary Lateral Sclerosis (PLS) and
Hereditary Spastic Paraplegia (HSP). These closely related
upper motor neuron disorders affect some 24,000 children and adults across the United
States and Canada. The SPF is dedicated to finding the cures for these conditions
and providing information and support services.
The seed for the Foundation was planted in 1996. That’s when Cheryl Schumer, a computer
programmer whose family members have HSP, created the first website dedicated to
HSP. Within the year, she also launched an email support group
for people with HSP, providing a way for people to connect and help one another.
A couple of years later, Joe Alberstadt and Mark Weber established email
support groups for people with PLS and Frank Reyerse created a PLS website
and online database where people could enter their contact information.
From there, in-person meetings began to blossom, finally putting people with these
rare disorders face to face. Lisa Chadwick organized the first such event in Pennsylvania
and was hired by a leading researcher to organize additional conferences. The goal
was not only to help patients but also to find subjects for research to advance
efforts to find the cure for these conditions. Joe, Kathi Geisler, France Cecere
and Dolores Carron began to hold meetings in their areas and establish support groups.
Joe created a newsletter to help people with PLS. Synapse is now published
by SPF with Thurza Campbell as editor. It is now dedicated to both the PLS and HSP
community. Today, many volunteers organize meetings (Connections) across the country
- see Calendar.
The next step was money for research.
In 1999, Shellie Fischer began to
design a national HSP Walkathon to
include a letter writing campaign.
Event preparations began in 2000
with the help of Mark Weber, Lois
Enright, Marlene Doolen, Dick and
Chris Delevan, Kathi Geisler and
many other volunteers. They sent
money, teddy bears (for the fire
department) and support. On Sept. 9,
2001 the event raised nearly $60,000
and supported development of the
first HSP spastin mouse model at the
University of Michigan . Mark
launched a PLS Donor Drive in 2001,
which raised funds for the National
Organization of Rare Disorders
(NORD) to establish NORD PLS
research grants and publish "The
Physician's Guide to PLS" brochure,
which has been distributed to more
than 14,000 neurologists and
hospitals. In the months following
the HSP walk, steps were taken to
form a foundation to make it easier
to host future fundraising events.
The name was changed to TeamWalk
and adopted as the signature event
of the foundation. Today it still
contributes a significant amount to
research and has branched out across
the United States.
Also in 2001, Kathi and Mark began to discuss working together to form one foundation
dedicated to finding the cures for upper motor neuron disorders and helping people
affected by them. In October 2001, with the assistance of the University of Michigan’s
John K. Fink, M.D., one of the world's leading HSP and PLS investigators, they organized
a steering committee comprised of more than twenty individuals from the two patient
communities.
In February 2002, the SPF was born and at this time, is still 100% volunteer managed
and operated. In addition to its ever-growing patient community, the SPF consists
of a volunteer Board of Directors, a Medical Advisor, and a Scientific Advisory
Board (visit Boards). Thanks to the dedication and hard
work of many individuals, in just seven years more than $2,000,000 has been targeted
to research on SPF conditions and thousands of people have been helped.
Cheryl Schumer |
JoeAlbertsadt with wife Carol |
Mark Weber |
Frank Reyerse
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Lisa Chadwick |
Kathi Geisler |
Frank Cecere |
Dolores Carron |
Shellie Fischer
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