We operate out of the strength of our community and
caring friends and sponsors. Your help makes
Contact us to
help in one of the areas below or to suggest another
way you can get involved.
Support research to speed our cures
First, check out our Giving Guide
to find out about the different ways you can support
research right now. Make your personal donation, learn
about the tax benefits of Planned Giving and find out
how to get your company or group involved.
Volunteering for your community
The primary focus of
SPF is to raise funds to support research to find the
causes, treatments and cures for primary upper motor
neuron disorders Hereditary Spastic Paraplegia and
Primary Lateral Sclerosis. Our national community event
is our annual TeamWalk
For Our Cures. Additionally, individuals from any
part of the country can help organize local fundraisers.
Individuals are also needed to secure corporate
sponsorships and help with grant applications.
here to read about ways you can
help raise funds for research.
2. Patient Connections program
Organizing a Connections gathering for people to meet,
share stories and help one another is a great service.
Events can be as simple as meeting for coffee! In areas
with large patient populations, SPF seeks to establish
Chapters. Check out our Calendar
Page to see what events are coming up.
3. Conference organizers
The SPF seeks event coordinators in or near metropolitan
areas who can work with us to organize Conferences for
our community. These events feature speakers and programs
on special topics of interest to our community as well
as provide the opportunities for individuals to meet
others. Conferences can be half-day or full-day events.
Individuals with writing, research, website or graphic
design skills are needed to assist with various communications
Ambassadors raise awareness about our disorders as well
as enhance community building and industry relationships.
You can assist with media relations, share your story,
speak at local groups or help with grassroots advocacy.
6. Business and administrative support
Volunteers with business and administrative skills can
play a valuable role in administering the work of the
SPF. Most of the help is coordinated through email correspondence
and uses popular Office applications. Hands-on help
is also needed at SPF offices located near Boston, MA
and in Columbus, GA, Austin TX, and Fairfax, VA.
7. Management of the SPF
SPF is managed by concerned volunteers in our community.
We are still a very young organization. If you have
professional skills and are interested in serving on
the Board of Directors or the Advisory Board, please
Your participation in research studies is vital in
helping discover the causes and cures for our conditions.
There are many on-going studies, and many do not require
travel. Please search
Trials to find out about potential studies you can
be involved in. Please
us to hear about blood donations.
Note on autopsies: John K. Fink, M.D., the
SPF Medical Advisor, seeks autopsies from people with
HSP and PLS. Anyone who wishes to permit an autopsy
for medical research should make this desire known in
writing to their family and doctor. It is important
that the pathologist contact Dr. Fink's laboratory immediately
for instructions: 734-936-8174. Samples will be taken
and sent to the research lab, after which the funeral
can proceed as normal. If you have a loved one with
HSP or PLS who becomes terminally ill, please consider
this important gift to research.