How to Help

We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference!

Please contact us at volunteer@sp-foundation.org to help in one of the areas below or to suggest another way you can get involved.

 

Support Research to Speed Our Cures by Volunteering

Below you’ll find information on some of the ways you can help SP Foundation in their search for a cure to PLS and HSP.

 

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 a TeamWalk. 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.

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.

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 communication initiatives.

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. Visit the State Ambassador page to learn more about the program.

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.

SPF is managed by concerned volunteers in our community. We are still a very young organization. If you have professional skills please consider serving on the Board of Directors or the Advisory Board.

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 about participating in Clinical Trials.
Search Clinical Trials to find out about potential studies.
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 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.

For additional information, email us at information@sp-foundation.org

© Copyright 2014 Spastic Paraplegia Foundation, Inc. All Rights Reserved | All information is completely confidential. The Spastic Paraplegia Foundation will under no circumstances allow any vendors or associations access to your information. Thank you for your continued support.