First SPF Research Grants are awarded! Press Release

The Spastic Paraplegia Foundation, Inc. (SPF) is a national, not-for-profit, voluntary organization founded in January, 2002. Not affiliated with any one institution, it is the only organization in the Americas dedicated to two groups of rare, neurologic disorders called Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP). These upper motor neuron disorders are thought to affect some 20,000 individuals across the United States.

The SPF is devoted to understanding the causes and discovering the cures for these conditions. It also serves as the primary source of information on the disorders and seeks to enhance awareness and establish networking and support initiatives for the patient community. National headquarters are in Chelmsford, Massachusetts.

The Foundation's policies and activities are overseen by a Board of Directors comprised of business and community leaders. The Scientific Advisor is a world-renowned investigator who also oversees the country's largest clinic for people with HSP or PLS.  A Scientific Advisory Board (SAB) consists of acknowledged leaders in the field of neurology who provide high-level medical and scientific guidance. They also review and grade applications for Research Grants; the SPF Board of Directors makes award determinations based upon their recommendations. Click here for lists of the SPF Board of Directors, Medical Advisor and Scientific Advisory Board.

Here is our one-page (pdf) Fact Sheet.

Thanks to the hard work and support of our community and friends we had a very successful launching year.  The majority funds was raised through our national TeamWalk event and reflects our community's and supporter's strong dedication to our mission. We are very proud that operating and fundraising costs were just 7% of revenue. Early in 2003, we announced the availability of our first two research grants: a $40,000 grant for PLS research and a $40,000 grant for HSP research. 

In our first year, we also held a number of educational Conferences featuring leading experts, expanded support programs and made great strides in enhancing awareness. Visit our Connections Page to see summaries and photos taken at some recent events. Visit Calendar to see upcoming events and other opportunities.

   

The SPF was born out of the explosive growth of Internet communities that were born in 1997 and 1999 when Cheryl Stapley (far left) launched the first online HSP community email group and Mark Weber (left) established the first one for the PLS community. These were the first efforts to provide a way for individuals with these conditions to connect with others.

The internet groups supplemented the first informational websites created for the disorders. Cheryl developed the HSP website in 1996 and Frank Reyerse (left) created the PLS website in 1999. In 1985, more than a decade before, Frank Levy had launched The PLS Newsletter. These initiatives filled the critical need for information. With the addition of the email support groups launched by Cheryl and Mark, the stage was now set for communities to form and begin organizing.

The online communities grew rapidly, ending the isolation and filling the need for support as well as information. Soon, people began to move beyond the internet to organize meetings. Joe Alberstadt (PLS), (far left, with his wife Carol) and Lisa Chadwick (HSP), (left), organized the first events. During that period, Joe launched a second newsletter concerned with PLS called Synapse.

In 2000 and 2001, Kathi Geisler (HSP), far left, and Dolores Carron (PLS), left, formed the first regional groups. In recognition of how closely related the disorders are, they were open to both communities. Dolores' Connecticut Connection was the first registered support group in the world for these conditions. The term "Connection" was coined by Frank Cecere, who organized (with Dolores' help) the first meeting in Connecticut. "Connection" is now used as a general term for community events.

People also began to raise money for research. Shellie Fischer (left) organized a national HSP Walkathon, which supported development of the first HSP spastin mouse model. Mark launched a PLS Donor Drive, which raised funds for the National Organization of Rare Disorders (NORD). This effort funded three NORD PLS research grants and "The Physician's Guide to PLS" brochure, distributed to over 14,000 neurologists and hospitals.

More people began to volunteer to help our communities, however, significantly more people seeking help and information were finding their ways to the online networks. It was becoming increasingly challenging for a handful of patients to address the ever-increasing needs as well as desires to raise funds for research. It was clear that a foundation was needed and that there was capacity to form one.

Working together

HSP and PLS are groups of neurologic disorders along the motor neuron disease continuum and share the unique distinction of being "upper motor neuron" disorders. Their symptoms overlap and they are so closely related clinically that they are often diagnosed one for the other, depending upon the clinician. In many cases, a final diagnosis between the two cannot be determined. See SPF Disorders.

As rare communities with a lot in common, a handful of individuals began to explore working together to form one foundation - a foundation dedicated to finding the cures for upper motor neuron disorders. Researchers feel discoveries made in these conditions may have an important impact on related conditions such as amyotrophic lateral sclerosis (ALS), other neurodegenerative diseases and spinal cord injury. See Research. 

In October, 2001, with scientific and medical consultation provided by John K. Fink, M.D., University of Michigan, one of the world's foremost investigators of PLS and HSP, Mark and Kathi organized a foundation steering committee. It was comprised of more than twenty individuals from the two patient communities.

In January 2002, the Spastic Paraplegia Foundation, Inc. was launched. The SPF Medical Advisor is Dr. Fink. A Scientific Advisory Board chaired by Martha Nance, M.D., one of the nation's leading experts, was formed and includes leading researchers and clinicians in HSP and PLS.

Click here for lists of the SPF Board of Directors, Medical Advisor and Scientific Advisory Board

The Spastic Paraplegia Foundation, Inc. is:

• A nonprofit corporation under section 501(c)(3) of the U.S. Internal Revenue Code. The federal tax identification number is 04-3594491. 
• Subject to an annual independent audit conducted in accordance with generally accepted auditing standards. The 2002 audit was conducted by Huber, Ring, Helm & Co - St. Louis, MO.

Please see our Corporate Documents.