Board Business; 2018 SPF Annual Conference Coming Up Soon; My Alternative to Golf, Jim Brewi; My Ambassador Experience, Jeff Stern; Tina's Tips; My Home Exercise Program, Jim Sheorn; Gene Therapy, Malin Dollinger; The Gift Only We Can Give, Deborah Warden; 4th Annual CReATe Meeting, Frank Davis; Invitae Expands Rare Disease Network; An Interview with Dr. Craig Blackstone, PhD, Allen Bernard; Some State Connections
Board Business, New SPF Board Member, Jim Sheorn, Golf Tournament Fundraiser in KY, Annual NY Fundraiser, Living with HSP/PLS Stories and Tips, Medical & Research, Ongoing Collaboration between SPF and Australia HSP Research Foundation, Gene Therapy, our Latest Potential Treatment, Connections, Tina's Cane Tips, SPF Partners with Invitae
Board Business, 2017 Annual Conference Recap, Handicap Aids, How to Get the Most from Your Doctor, Connections, Tina's Tips, Living with HSP and PLS
Quinn Family Virtual Fundraiser; 2017 Annual Conference Agenda; 2017 Annual Conference Speakers; 2017 Annual Conference Sponsors; Disability Law, CRISPR/ Cas9 Patent Litigation; Your Wheels are Your Legs Part 2, Activities and Opportunities for Kids with Special Health Condition Needs; Tina's Tips
How to Help, Board Business, Fundraising & Connections, Tina's Tips and 2 Personal Stories, Disability Law, NEALS Meeting Oct 2016, Your Wheels Are Your Legs, 2107 Annual Conference Registration.
2016 Annual Conference Talks - Three New SPF Board Members - Board Business - Disability Law - Connections - Tina's Tips
Rare Disease Day - CRISPR Patent Litigation - Tek Robotic Mobilization Device, 2016 Pediatric HSP Conference - CASE report PLS - MNDs & UTIs - Hip Flexor Pain or Spasms? - Treat Your Feet - Marc Dollinger Runs the Orange County Marathon to Honor his Dad - Malin Dollinger's HSP Story - Connections - Tina's Tips
HSP/PLS Survival Kit - 10 Things to Know about Emergency Preparedness - Applebees Restaurants Help HSP & PLS - How to Get a Service Dog - SPF Offers Support - New Tek Mobility Device - Disability Law: 504 Rehab Act - SPF Awards Grants Worth $622,000 - What is CRISPR - Research Group on Motor Neuron Disorders - Tina's Tips
International HSP Letter to Dr Rebecca Schule MD - SPF Board Business - Federal Employees Want to Help SPF - 2015 SPF Annual Conference Talks - Connections - Rebecca Hart Has 3 Top Finishes in European Tour - PLS: Getting Speech Back - Speech Generating Devices - ADA at 25 - Getting a Service Dog - Tina's Tips
SPF Board Business - How to be a State Ambassador - Connections - HSP & Exercise - It's All About Your Base - Life With Adaptive Sprots - My Wheelchair Experience - Be Your Own Best Advocate - To Parents of Kids with HSP - Earth Angels - IPhone Medical ID - Tina's Tips
Connections - Spreading Awareness - Athena Improves Affordability of Genetic Testing - Dr Fink's Recommend-ed Exercises - 2014 Research Awards - MS Drug Aids Walking - Gene Testing for HSP - Cause of HSP - Be Informed and Prepared - Useful Tips - HSP & Happiness - My Airport Experience - Rebecca Hart at White Fences
Connections - How to Use Exercise Bands - 2014 Annual Conference Talks - Two Articles on How to Prevent Pressure Sores - A Personal Story About Foot Dragging
2014 Annual Conference information,remedies and more…
Please let Your Federally Employed Friends and Family Know About the CFC Campaign
The Combined Federal Campaign or CFC is a fundraising campaign the Federal Government offers its employees. It runs from Septem-ber 1st through mid Decem-ber. Federal Employees are allow-ed to pick from over 200 register-ed nonprofits to contribute to. Many CFC fairs will be held at Federal facilities through out the United States. This allows employ-ees to learn about the nonprofits and make their selections.
The Spastic Paraplegia Founda-tion's CFC number is 12554. Examples of Federal employees are: law enforcement, United States Postal Service, Veterans Administration, Medicare, Medi-caid, military and many types of governmental jobs. Please advise them soon!
If you have any questions or suggestions, please contact Jim Sheorn at firstname.lastname@example.org
Join Us and Stay Informed
When Clinical Trials begin in 2018 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
An Organization You Can Trust
87 cents of every dollar you donate goes into our mission of research and service. 7 cents goes to fundraising and 6 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.