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Synapse
Highlights of Synapse issues include updates about SPF events and developments, tips for navigating life with HSP or PLS, articles from our readers, and a message from our president. We actively invite readers to share their stories, creativity, and learnings to help connect and support the HSP and PLS community. You can submit articles HERE
How to Help, Letter from the President, 2024 SPF Annual Conference details, Sponsorship Opportunities for the conference, 2023 Year End Totals
How to Help, Letter from the President, SP-COE, Connections and Events, Photos from The St. Louis Conference, Golfing for Rare Disease, Annual 5K run Walk and Roll, Year End Fundraiser/ Giving Tuesday, Momentum, Sponsors, Silver Linings
President’s Letter; SPF Committees; Every Life Foundation for Rare Diseases; Rare Disease Congressional Caucus; Fundraising Idea - Live Life Have Fun; Exercise & Stretch; Care for a Caregiver; 2023 SPF Events Calendar; Acknowledgements
Spring 2023President’s Letter .............................. 3
2022 SP-Foundation Annual
Conference Highlights ........................ 4
2023 Marks SP-Foundation’s 21st
Annual Conference ............................ 5
2023 SP-Foundation Annual
Conference Registration is Open .......... 5
Virtual Conference Registration Fees .... 6
2023 2023 Annual Conference
Tentative Agenda............................... 7
Hotel Reservations............................. 7
Conference Scholarship Program ......... 9
Conference Details............................10
Conference Registration Form & Fees ..11
President’s Letter; Living Life with HSP; Changes; I Refuse to Give Up!; Celebrating KIDINS220 Awareness Day; Two Perspectives on Advocacy; Not Just Lip Service: Tips from a Speech-Language Pathologist’s Point of View; Helpful Hints for Navigating Theatres, Auditoriums, and Other Public Places; Accessible You Say?; Getting a Service Dog: Insight into the Process; SPFIllinois Connection March 2022; Abilities Expo in Dallas; Cowboy Up, Volunteer, and Find your Song; Tip of our Cowboy Hat to our 2022 Annual Conference Sponsors; Register Now for the 2022 SPF Annual Conference in Nashville
President’s Letter, Traveling the SPG4 Highway, Rare Disease Day is February 28, Hospitalization and You: Part Two - Planning for a Hospital Stay, Taking Control of Incontinence, Move Better in 2022!, Simply Having an Accessible Wintertime! Tips for Thriving This Winter, Can’t Wait to Go? The Restroom Access Act Helps Make Life Easier, Being a SPF Ambassador can be Life Changing!, North Texas Luncheon, Virtual Brazil Connection, Take a Hike! Conquering Enchanted Rock, Register Now for the 2022 SPF Annual Conference in Nashville
President’s Letter, Learning to Live Our Best Lives with HSP, Evan Austin Honored to Go to Third Paralympic Games, I’m Done!, Your Donation: Money with a Mission, 2021 Combined Federal Campaign, North Texas Home Court Advantage, 2021 HSP and PLS Awareness Week Highlights, Hospitalization and You: Part One - Planning for Hospital Emergency Care, My Lower Back Surgery during COVD, Please Get Out of Your Car, Houston Abilities Expo, SPFIllinois October 2021 Connection, Your Words Can Change Lives, Virtual Texas Connection, Giving Tuesday: Be the Good on November 30!
President’s Letter, Combined Federal Campaign, Life in a Triple Convergence, Logan’s Story, Resignify, No Stopping Me Now!, A Journey of a Thousand Miles, Learning to Overcome the Challenge of HSP, Ten Steps for Coping with a Chronic Illness, Grab a Chair and Sit to Get Fit, You Asked, We Answered: FAQs about PLS, Take the Challenge During HSP and PLS Awareness Week, Look Good. Do Good. Shop the New Online SPF Store, Tina’s Tips: My NuStep, Everyone has a Story to Tell. What’s Yours?, Why Your Donations are Important
President’s Letter, Bon Voyage: 2020 in the Rearview Mirror, Chelsea’s Story, But You Did Everything Right, The Path to a Diagnosis with SPG7, Find Your Family, There’s No Place Like Home: Tips for Creating a Home Gym, Knees Bang Together?, Tips to Limit Fatigue for Persons with HSP or PLS, Ascending and Descending a Staircase, SPF Illinois Virtual Connection, Everyone has a Story to Tell, Choose Your Way to Support Finding a Cure, Look Good. Do Good. Shop the New Online SPF Store.
President’s Letter, Print Too Small?, A Chance Encounter, PLS and My Travel Bug, A Crushing Moment of Fear, Blessed Beyond Measure, My Journey with Hereditary Spastic Paraparesis/Paraplegia, A Long Walk to Non-Freedom, SPIllinois Connection Zoom, The Fifteen-Year Odyssey to Diagnosis: An All Too Familiar Story, What’s in a Name?, My Children’s HSP Journeys, Making Diamonds, Brain Tissue Donation to Help HSP Research, Yoga Changed My Life, En Pointe: Ballet as Therapy, When You Are Ready to SCOOT, Making Strides with the WalkAide, Life After Diagnosis: Learning to Thrive with PLS, Meet Founder Joe Alberstadt, North Texas Virtual Connection, Iowa Virtual Connection, Adli Does It Again!, All the Way Up – My PLS Journey
President's Letter, SPF 2020 Global Virtual Conference, A Brief History of My HSP Journey, This Disease Doesn't Define Me, Do I Use My Condition as a Crutch?, "Automatic" Shoes, HSP is Not Self Correcting, My HSP Story, Straight Toes, Vitamin D, Mental Health, Supporting the Quest for Cures, To Catch a Thief, Gardening with PLS, Heels are a Girl's Best Friend, Your Scooter/Wheelchair as the Driver's Seat What is HSP and Why Am I Writing About it?, Urgent! SPF Needs Your Assistance, Support the Printed Version of Synapse, Don't Blame the Rain, QR Code for Ease of Donations, We Flow, Have Something to Write About?, How to Help, Awareness Week 5K Run, Walk or Roll
NEW FEATURE: Readers of the online Synapse and those who download the PDF file of the issue can now click on any article title on the front page or in the Table of Contents (“In This Issue”) and be taken directly to that page.
President's Letter, Resilience Matters, A Career Sidetracked, Rare Disease Week on Capitol Hill, No, It wasn't My Worst Nightmare, Mobility Aids, Exercise & Stretching, Camping, Physical Therapy, Let Me Muscle In, SPF Online Store, Loving Better Today, Speech
President's Letter, Thanks for the Privilege, A New Look for Synapse, Annual Conference 2020: Registration Form, Conference Graffic, General Interest: Resilience Matters Part Two, First Brazilian Symposium, Party for More Than One, Staying Active with HSP, Importance of a Strong Support Network, This is Not All About Me, My Long Search for a Diagnosis, Still Searching for a Diagnosis, Becoming an SPF Ambassador, The Lab Rat Chase, Problems with your Bladder, Bridge to Sleep, Winter Walking Aids, Shirts with Magnetic Buttons, Fundraisers: Annual SPF Fundraiser in Mount Kisco, NY, The Rosella Vigliotta Golf Tournament, Connections Around the Country, Dropping by Hugh Fenlon, Time by Kathleen Kienlen, QR Code for Ease of Donations.
President's Letter, SPF Annual Conference 2020, Awareness Activities, SPF Annual Conference Presentation Summaries, General Interest Articles, Living with HSP & PLS Articles, SPF Fundraisers, SPF State Connections.
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
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
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 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…
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…
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…
“Growing, Protecting or Repairing Corticospinal Motor Neurons,” from the spring NE Connection, Dr. Jeffrey Macklis, Living with HSP/PLS (regular column), Caregiving and more…
Over 12,000,000 dollars for research!
Carin T Gurliaccio
