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Synapse Newsletter


2019

  • President's Letter, San Antonio Annual Conference, Total Cost of Synapse, 1st Annual Canada SPF Conference, Dictus Bands, Better Walking Aids, A Mobility Aid for Maintaining Quality of Life, How to Slide on and off your Driver's Seat, I Believe, My Journey of a Diagnosis, Living with HSP/PLS, Tina's Tips, Incontinence from a Male's Perspective, Upright & Smiling, I Change My Focus, My 3 Steps to Overcoming HSP, Fundraisers: Punch-A-Thon Fundraiser, 2018 Donations from Amazon, California SPF Walk-A-Thon, Connection in West Virginia, QR Code for Ease of Donations, SPF Earns Gold Seal of Transparency

  • President's Letter; New Board Member, Carina Thurgood; Connections: Ottowa Ontario & Illinois; Synapse Survey Results; Fundraisers: California SPF Walk & Roll-a-thon; Potato Pants; 2019 Annual Conference San Antonio TX: Sponsors; Agenda; Presenters; Overflow Hotel Information; To do & see in San Antonio; Conference Registration Form; General Interest: Cane or no cane? Where are you? Koolkape, A Synapse Archive; Medical Research: Surgical Anesthesia in HSP & PLS; The Importance of Gene Testing; Living with HSP and PLS: Travel Turmoil; Rare Patient Voice

  • President's Letter. How to Help. New Board Member, Hank Chiuppi. Bush 41" & the ADA. Fundraisers. 2019 Annual Conference June 21-22. Featured Articles: Moving Past Denial by Mary Ann Inman, Spring I.P. Relay by Hank Chiuppi, Giving My Trike a Boost by Thomas J. Poulton MD, Stepping Into the Future with Mark Dvorak by John Dvorak, Slip Sliding Away by Tina Croghan; A Reaching Hint by Lewis Sid Clark, To My Master, Mr. Malin by Sparky, Travel Turmoil by Malin Dollinger; Medical & Research: Balancing Act: Potential Benefits of Physical Therapy by Pam Lanter, PT; Yoga & HSP by Mary Schultz; Shingles Revisited by Malin Dollinger, Tina's Tips: How to Carry Food, A Better Rollator Handle, Onward March, Getting in and out of a Pickup Truck, Footplate Lifting Ring; Connections:N. Ohio, Kentucky, Ottowa, Ontario, Canada, Illinois; Still Walking in My Dreams by Malin Dollinger

2018


  • 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

2017


  • 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


  • 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

2015


  • 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

2014


  • 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…

2013


  • Annual Conference 2013 - Connections - Wheelchair Accessible Tranvels - Abilities Expos - Exercise and You - CFC Helping Research - A Decade with HSP, A Personal Story - How I Got My Service Dog Annie - LSVT Speech Therapy - New Comprehensive HSP Test

  • SPF Receives $24,000 from ExxonMobil - How to be a State Ambassador - Personal Stories: 8th Grader Life with HSP, HSP Family Experience, My Story About My Family with HSP, Love Yourself, Reflections from Boston - Research Sound Bytes - Planned Giving

2012


  • Exoskeletons, Rock Climbing, Stem Cells and more…

  • 2012 Annual Conference Summary, Event summaries and photos, HSP Research Article, Adaptive Sports and more…

  • Maze of Stem Cell Transplantation, Event summaries and photos, Falling into Life with HSP, Sit-to-Stand Exercise and more…

  • Annual Conference information, Event summaries and photos, 2011 Grant Awards, Electric Scooter Tips and more…

2011


  • Depression & Suicide – The Unspoken Worry, Mobility Marvels – Hand Controls for Your Car, A New Use for Botox and more…

  • Annual Conference summary, TeamWalk information, Million Rays of Hope campaign, Dealing with Drooling and more…

  • Living with HSP/PLS, Why Exercise, Research updates, Annual Conference 2011 registration form, and more…

  • Annual Conference agenda, NEALS/SPF Collaboration Working Group Meeting, Memorial Garden, Fall TeamWalk reviews, and more…

2010


  • Airplane Rides Fundraiser, Physician Directory, Exercise and You: The importance of Posture, and more…

  • National Conference summary, Outreach Committee survey results, Mike Weber’s Ride Across America, and more…

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2009


2008


  • Medical research news, Living with HSP/PLS (regular column), and more…

  • “Growing, Protecting or Repairing Corticospinal Motor Neurons,” from the spring NE Connection, Dr. Jeffrey Macklis, Living with HSP/PLS (regular column), Caregiving and more…

  • Living with HSP/PLS (regular column), Wheelchair options, more…

  • Living with HSP/PLS (regular column), Advances in HSP Research, more…