The Spastic Paraplegia Foundation, Inc. (SPF) is a national, not-for-profit, voluntary organization incorporated in January, 2002. It is the only organization in the Americas dedicated to Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP). SPF is committed to providing information about for these disorders, creating opportunities for mutual support and sharing, and discovering the cures for HSP and PLS by funding research. 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 Aberstandt, 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 John Staehle as its long time 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’sleading HSP and PLS investigators, they organized a steering committee comprised of more than twenty individuals from the two patient communities.
In January 2002, the SPF was incorporated 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).To honor Kathi Geisler’s many volunteer hours, her employer, Millipore Corporation, awarded SPF a $5,000 grant in 2002. This grant provided critical start-up funds. Thanks to the dedication and hard work of many individuals, more than $6,700,000 in grants has been awarded for research on SPF conditions.