Synapse Newsletter


  • 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…