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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 Stapley 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 Thurza Campbell and also
dedicated to the HSP community as a partnership with
SPF. Today, many volunteers organize meetings
(Connections) across the country - see
Calendar.
The next step was money for research. In 2001, Shellie
Fischer organized a national HSP Walkathon with the help
of Kathi Geisler and other volunteers. 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.
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
five years more than
$1,000,000 has been targeted to research on SPF
conditions and thousands of people have been helped.
Cheryl Stapley Schumer |
JoeAlbertsadt with wife Carol |
Mark Weber |
Frank Reyerse |
Lisa Chadwick |
Kathi Geisler |
Frank Cecere |
Dolores Carron |
Michelle Fisher
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