First SPF Research Grants are awarded!
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,
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
Here is our one-page (pdf) Fact
Our first year
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.
History of our communities
||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
||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
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.
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
Click here for lists of the
SPF Board of Directors, Medical Advisor and Scientific
Tax status and financial standards
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