Dear Friends,

2002 was an amazing first year! Together, we joined hearts and hands and launched the national Spastic Paraplegia Foundation, dedicated to Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). It took hard work and partnership - partnership between patient communities … individuals … loved ones … health care providers … researchers … health organizations … community groups … industry.

Hard work and partnership accomplished a lot: we raised nearly $117,000 to go principally to research. Because this was our launching year and the organization was managed and supported by volunteers, our fundraising and overhead expenses totaled just 6.3% of total revenue. Thanks for making this possible!

Here is a brief rundown on income and expenses for 2002:

2002 Income Statement

As a result of all of our efforts, availability of our first two research grants has been announced: a $40,000 grant for PLS research and a $40,000 grant for HSP research. Ads for these grants appeared in the March issues of Neurology, Annals of Neurology, and American Journal of Human Genetics. Our remaining funds are targeted for future grants, educational and support initiatives and administration/fundraising expenses.

To entrust that your dollars support the best research, we formed a Scientific Advisory Board (SAB) comprised of experts who will review and rank applications for funding. Martha Nance, M.D., Medical Director of the Struthers Parkinson's Clinic in Golden Valley, Minnesota, serves as the SAB chairman. Her committee includes Laura Ranum, Ph.D., University of Minnesota, Minneapolis, Minnesota; Terry Heiman -Patterson, M.D., Drexel University, Philadelphia, Pennsylvania; Mary Kay Floeter, M.D., Ph.D., National Institutes of Health, Bethesda, Maryland; and Mark Gudesblatt, M.D., Brookhaven Memorial Hospital, New York.

We are very honored that John K. Fink, M.D., Director, Neurogenetic Disorders Clinic, University of Michigan, serves us as the SPF Medical Advisor. Dr. Fink is an internationally recognized investigator whose laboratory is dedicated to finding the causes of HSP and PLS and developing treatments for them.

Here are a few highlights from our first year – thank you for making them happen:

• TeamWalk, held in Chesapeake VA, was our primary fundraising event. This initiative has been established as our annual, signature event. Its unique “Walker by Proxy” program allows everyone to participate in the event, from near and far.
• Four national conferences featuring top researchers and more than fifteen local events were held across the country. For most attendees, it was the first time meeting other people with a similar disorder and receiving adequate information about the disorders.
• SPF Chapters on PLS and HSP are published in Movement Disorders, a new medical reference book.
• An E-News bulletin brings news and helpful information to more than 1,200 individuals every month.
• Email groups provide daily connection, support and information for more than 600 individuals.
• SPF is included in resource listings of pertinent major health organizations.
• A temporary website provides the latest on research, events and basic information about the disorders.
• Articles on our disorders, individuals affected by them and the SPF appeared in many newspaper articles.

As we move ahead, we’ll organize our 2nd annual TeamWalk and develop other fundraising projects. A comprehensive, medically reviewed website is underway. We’ll continue to strengthen our online patient community, organize conferences and events, enhance awareness, develop outreach initiatives and begin regional group development. We are fortunate to have so many dedicated individuals working together!

Our primary mission: cures for HSP and PLS. Finally, there is realistic hope. In just the past year, three new HSP genes have been discovered. In the previous year, the genes for a juvenile type of PLS and other HSP conditions were discovered. These gene discoveries are key to understanding the biochemical processes that cause neurological degeneration and will allow researchers to begin to explore treatments and cures.

We are getting closer. Animal models (mice) in which to explore the molecular causes and treatments of HSP and PLS are being developed and showing promising results. Researchers predict that these studies will have enormous impact on understanding how HSP and PLS gene alterations affect spinal cord nerves. This could also lead to discoveries for treatments for amyotrophic lateral sclerosis (ALS) and spinal cord injury.

It will take time, as well as money. Fortunately, the timeline is shrinking. Time to market for a new drug has come down from fifteen years to ten years, and, the time to locate disease-causing genes has been dramatically shortened. What will further hasten the time to a cure? Placing funds into the hands of researchers.

Again, to you who have helped this first year, our deep and sincere thanks. Together, we are making a difference. Please contact us if you’d like to become more involved!

Very truly yours,

Mark S. Weber, Esq., President, Board of Directors
Kathi P. Geisler, Vice-President
David Lewis, Treasurer
Marlene Doolen, Secretary
Annette Lockwood, Member
Dianna Aguilar, Member
Carolyn Sartain Anderson, Member