Support Synapse by John Staehle, Make Easy-No Cost Donations to SPF by Jackie Wellman, Ambassadors Needed by Jackie Wellman, Combined Federal Campaign, 2018 Annual Conference Recap, A Big Thanks to Our Conference Sponsors, Annual Conference Presentation Summaries, A Letter from your Handicap Scooter by Malin Dollinger, Recumbent Bike is Freedom from HSP by Mary B Schultz, Travel Turmoil by Malin Dollinger, I Touched the Water by Tina Croghan, Snap Out of It by Tina Croghan, Its Time to Talk About Frustration by Lewis Sid Clark, Sharing Chronic Illness Challenges by Mary Ann Inman, Walking Test May Assist in Therapies by Greg Pruitt, Gene Therapy - Legal Issues by Mary B Schultz, SPF State Connections: Illinois, Houston, Austin & St Louis , How to Help
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…
CONGRATULATIONS! We actually beat our goal by a long shot!
Our goal was to reach the matching donation of $150,000 and we overshot that amount by a good amount! You along with the rest of our donor family donated over $234,000. That ,combined with the $150,000 match means we raised more than $384,000 in two months! That is GREAT and will make a world of difference for people with HSP and PLS. This means we will be able to support over $600,000 worth of research projects in the year of 2019. Our Scientific Advisory Board has been working for months on the research projects that have been proposed for our support and they are about to complete their advice for us on what we should be supporting.
Every year science progresses many, many steps forward over what was known and could be done the year before. We have gone from doing research to fill text books to today where the actual light of a cure is within sight and within hope. It is an exciting time to be alive and especially an exciting time to be working toward the day when we can offer sincere hope for a cure for HSP and PLS.
Thank all of you who donated to this very worthy cause that is offering an awesome promise of a new life for over 100,000 people suffering from HSP and PLS on this planet.
It is not too late. Our annual anonymous donor continues to match all donations made on a monthly or quarterly basis. If you would like to have your donations matched, just post your donation on a convenient monthly or quarterly basis. Just click below and check the monthly or quarterly option. Pick an amount that works for you.
Thank you again!!!
Join Us and Stay Informed
When Clinical Trials begin in 2019 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.