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We operate out of the strength of our community and
caring friends and sponsors. Your help makes
a difference!
Contact us to
help in one of the areas below or to suggest another
way you can get involved.
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.
1.
Raise funds to help find the cure!
The primary focus of
SPF is to raise funds to support research to find the
causes, treatments and cures for Hereditary Spastic
Paraplegia and Primary Lateral Sclerosis. Our major
fundraising activity consists of
TeamWalk Connections.
Individuals can help organize local
fundraisers.
Please review this
Fundraiser Event Form and contact us with your
ideas!
People are also needed to secure corporate
sponsorships and help with grant applications. Please click
here to read more details 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.
4. Communications
Individuals with writing, research, website or graphic
design skills are needed to assist with various communications
initiatives.
5. Ambassadors
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.
Click
here for more information on being a State
Ambassador. Please
contact us if you would like to become a State
Ambassador (current list).
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.
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
contact us.
Board Member Responsibilities and
Board Member
Application
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. The National Institutes of Health usually
reimburses for travel to Bethesda, Maryland. Read all about participating in Clinical Trials
here. You can search
Clinical
Trials to find out about potential studies you can
be involved in. Please
contact
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. Whenever possible,
it is important that arrangements for autopsy be planned
in advance by so that logistics between Dr. Fink's
laboratory and the Pathologist may be coordinated. Dr.
Fink' may be reached at 734-936-3087 (FAX 734-615-6340).
Presently, autopsies are not covered by research funding
and therefore there are costs that the family will
incur. Samples will be taken and sent to Dr. Fink's
laboratory 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.
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