The newsletter was published quarterly and provides information on news, research, practical advice and a summary of local activities. 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. See all the past SPF Synapse Newsletters published since 2000 to 2024.
The Synapse began before the Spastic Paraplegia Foundation was formed. It originally focused on PLS but soon became the official newsletter of SPF. Since the vision of SPF is "the day when all individuals with HSP or PLS are diagnosed, treated, and cured", the newsletter changed to include both diseases.
2024
-
In This Issue
President's Letter
2024 SPF Annual Conference details
Sponsorship Opportunities for the conference
2023 Year End Totals
2023
-
In This Issue
President’s Letter
2022 SP-Foundation Annual Conference Highlights
2023 Marks SP-Foundation’s 21st Annual Conference
2023 SP-Foundation Annual Conference Registration is Open
Virtual Conference Registration Fees
Conference Scholarship Program
Conference Details
Conference Registration Form & Fees -
In This Issue
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 -
In This Issue
President's Letter
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
2022
-
In This Issue
• President’s Letter
General Interest
• Living Life with HSP
• Changes
• I Refuse to Give Up!
• Celebrating KIDINS220 Awareness Day
• Two Perspectives on Advocacy
Medical and Health
• Not Just Lip Service: Tips from a Speech-Language Pathologist’s Point of View
Living with HSP/PLS
• Helpful Hints for Navigating Theatres, Auditoriums, and Other Public Places
• Accessible You Say?
• Getting a Service Dog: Insight into the Process
Connections
• SPF Illinois Connection March 2022
• Abilities Expo in Dallas
Other
• Cowboy Up, Volunteer and Find Your Song
• Tip of our Cowboy Hat to our 2022 Annual Conference Sponsors
• Register Now for the 2022 Annual Conference in Nashville, Tennessee -
In This Issue
• President Emeritus Letter
• President’s Letter
General Interest
• Traveling the SPG4 Highway
• Rare Disease Day
Living with HSP/PLS
• 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 AccessAct Helps Make Life Easier
• Being a SPF Ambassador can be Life Changing!
Connections
• North Texas Luncheon
• Virtual Brazil Connection
• Take a Hike! Conquering Enchanted Rock
Other
• Register Now for the 2022 SPF
• Annual Conference in Nashville, Tennessee
2021
-
In This Issue
• President’s Letter
General Interest
• 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
Living with HSP/PLS
• 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
Connections
• SPF Illinois
Other
• Everyone has a Story to Tell
• Choose Your Way to Support Finding a Cure
• Look Good. Do Good. Shop -
In This Issue
• President’s Letter
General Interest
• 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
Medical and Health
• Ten Steps for Coping with a Chronic Illness
• Grab a Chair and Sit to be Fit
• You Asked, We Answered: FAQs About PLS
Living with HSP/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
Other
• Combined Federal Campaign
• How to Help
• Everyone has a Story to Tell
• Why Your Donation is Important t -
In This Issue
• President’s Letter
General Interest
• 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 HSP and PLS Awareness Week Highlights
• North Texas Home Court Advantage
Medical and Health
• Hospitalization and You: Part One, Planning for Hospital Emergency Care
• My Lower Back Surgery during COVID-19
Living with HSP/PLS
• Houston Abilities Expo
• Your Words Can Change Lives
• Please Get Out of Your Car
Connections
• SPF Illinois
• Texas
Other
• 2021 Combined Federal Campaign
• Giving Tuesday: Be the Good on November 30 -
In This Issue
• President’s Letter
• Print Too Small?
General Interest
• 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
• SP Illinois Connection Zoom
• The Fifteen-Year Odyssey to Diagnosis: An All Too Familiar Story
• What’s in a Name?
• My Children’s HSP Journeys
Medical & Research
• Making Diamonds
• Brain Tissue Donation to Help HSP Research
Living with HSP/PLS
• 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
Flashback
• Meet Founder Joe Alberstadt
Connections
• North Texas Virtual Connection
• Iowa Virtual Connection
Fundraisers
• Adli Does It Again!
Other
• All The Way Up – My PLS Journey
2020
-
In This Issue
• President’s Letter
• From the Editor
• QR Code for Ease of Donations
• About Your Synapse Subscription
SPF 2020 Global Virtual Conference
• SPF 2020 Global Virtual Conference
General Interest
• Resilience Matters – Part Three
• The Rocky Road Diagnosis
• A Career Sidetracked by a VUS
• I had Ataxia for 27 Years
• Rare Disease Week on Capitol Hill
• My Name is Constance Rucker
• Camping – Part Two
• No, It Wasn’t My Worst Nightmare
• Chapter Two
• Notes from Hospital and Rehab Stays
• It Need More Power
Living with HSP/PLS
• Mobility Aids
• Exercise and Stretching is Key
• My Take on Physical Therapy
Connections
• North Texas Connection
Other
• Let Me Muscle In (by M. Dollinger)
• SPF Online Store
• Loving Better Today (by J. Blaylock)
• Speech (by H. Fenlon) -
In This Issue
• President’s Letter
SPF 2020 Global Virtual Conference
• SPF 2020 Global Virtual Conference
General Interest
• 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
Medical & Research
• Straight Toes
• Vitamin D
• Mental Health
• Supporting the Quest for Cures
Living with HSP/PLS
• To Catch a Thief
• Gardening with PLS
• Heels Are a Girl’s Best Friend
• Your Scooter/Wheelchair as the Driver’s Seat
Flashback
• What is HSP and Why Am I Writing About it?
Other
• Urgent! SPF Needs Your Assistance
• Support the Printed Version of Synapse
• Don’t Blame the Rain (by J. Blaylock)
• QR Code for Ease of Donations!
• We Flow (by J. Blaylock)
• Have Something to Write About?
• How To Help
• Awareness Week 5K Run, Walk or Roll -
In This Issue
• President’s Letter
• Thanks for the Privilege
• A New Look for Synapse
Annual Conference 2020
• Registration is Open
• Registration Form
• Conference Graphic
General Interest
• Resilience Matters - Part Two
• First Brazilian HSP Symposium
• Staying Active with HSP
• Reflections
• Importance of a Strong Support Network
• Party of More Than One
• This Is Not All About Me
• My Long Search for A Diagnosis
• Still Searching for a Diagnosis
• Becoming an SPF Ambassador
• The Lab Rat Clause
Living with HSP/PLS
• Problems with Your Bladder?
• Bridge to Sleep
• Winter Walking Aids
• Shirts with Magnetic Buttons
Fundraisers
• Annual SPF Fundraiser, Mt. Kisco, NY
• The Rosella Vigliotta Golf Tournament
Connections
• SPFIllinois Connection
• Making Connections in Ohio
• Ottawa Ontario Connection
• Sarasota, Florida Connection
Other
• Dropping (by Hugh Fenlon)
• Time (by Kathleen Kienlen)
Synapse Newsletters from 2010 - 2019
2019
-
Winter 2019
In This Issue
• President’s Letter
• How to Help
• New Board Member, Hank Chiuppi
• “Bush 41” and the ADA
Fundraisers
• New York Fundraiser
• Golfing for Rare Disease
• California TeamWalk ‘n’ Roll
• North Carolina Fundraiser
2019 Annual Conference, San Antonio
• First Look
• Hotel Reservations
• Conference Registration Form
Featured Articles
• Moving Past Denial
• Sprint IP Relay
• Giving My Trike a Boost
• Stepping into the Future with
• Mark Dvorak, “Slip Sliding Away!”
• A Reaching Hint
• To My Master, Mr. Malin
• Travel Turmoil
Medical & Research
• Balancing Act: Potential Benefits of Physical Therapy
• Yoga and HSP
• Shingles Revisited
• Tina’s Tips
• How to Carry Food
• A Better Rollator Handle Grip
• ONWARD…MARCH!
• Getting In and Out of a Pickup Truck
• Footplate Lifting Ring
Connections
• 2018 Northern Ohio Connection
• Kentucky Connection
• Ottawa, Ontario Connection
• SPF Illinois Connection
• Still Walking In My Dreams

-
Spring 2019
In This Issue
• President’s Letter
• New Board Member, Carina Thurgood
Connections
• Ottawa Ontario Connection
• SPF Illinois Connection
• Synapse Survey Results
• California SPF Walk ‘n Roll-athon
• Potato Pants: Helping to Fund
• HSP/PLS Research
2019 Annual Conference, San Antonio
• 2019 Annual Conference sponsors
• Agenda
• Presenters
• Overflow Hotel Information
• To Do and 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 and PLS (article also on website)
• The Importance of Gene Testing
Living with HSP and PLS
• Travel Turmoil
• Rare Patient Voice

-
Summer 2019
In This Issue
• President’s Letter
San Antonio Annual Conference
• Thank You for Making Our Conference One of the Best
• Thanks to Our Conference Sponsors
• Summary and Updates on Gene Therapy
• An Effective Treatment for HSP
• Using Mice to Understand HSP and New Treatments
• An Interview with SPF Medical Advisor, John Fink, M.D.
• Three Receive Award at Conference
General Interest
• The Total Cost of Synapse
• 1st Annual Canadian SPF Conference
• Dictus Bands
• Better Walking Aids
• A Mobility Aid for Maintaining Quality of Life
• Hard to Slide On & Off Your Driver’s Seat?
• I Believe
• My Journey to A Diagnosis
• Living with HSP/PLS
• Tina’s Tips
• Incontinence, A Male Perspective
• Upright and Smiling
• I Change My Focus
• My 3 Steps to Overcoming HSP
Fundraisers
• Punch-a-Thon Fundraiser
• 2018 Donations from Amazon
• California SPF Walk ‘n Roll-athon
Connections
• West Virginia Connection
Other
• QR Code for Ease of Donations!
• SPF Earns Gold Seal of Transparency

-
Fall 2019
In This Issue
• President’s Letter
• SPF Annual Conference 2020
• Awareness Activities
Annual Conference Presentation Summaries
• PLS Functional Rating Scale & Report on 2nd International PLS Medical Conference
• Cellular and Molecular Basis of Upper Motor Neuron Vulnerability
General Interest
• The Alinker
• Wheelchair Bowling
• The Pros and Cons of a Diagnosis
• How My Disability Changed My Perspective on Job Seeking
• Freedom is a Lift Named Joey
• I Went to the Beach
• My Search for a Diagnosis
• A Good Day
• Resilience Matters - Part One
• BILLY Shoes
• My Journey from CP to HSP
• Broken Barn
• You Got Game?
Living with HSP/PLS
• Incontinence, A Male Perspective
• Remaining Positive in the Midst of Uncertainty
• Flora Brand’s Story: Living with PLS
• Lock Laces
Fundraisers
• The 2019 Combined Federal Campaign
• Golfing for Rare Diseases
• California SPF Walk ‘n Roll-athon
Connections
• SPF Illinois Connection
• Central Texas Patient Connection
• Inaugural Wisconsin Connection
Other
• QR Code for Ease of Donations!

2018
-
Spring 2018
Letter from the President
Board Business
Annual Conference in Pittsburgh, Pennsylvania
• Agenda
• Speakers
• Registration
General Interest
• My Alternative to Golf
• My Experience as the Maine SPF Ambassador
• Tina’s Tip - Calories vs. Mobility
• My Home Exercise Program
Medical & Research
• Gene Therapy: New Developments and Ethical Implications
• Lifecycle of Prescription Drugs
• The Gift Only We Can Give
• 4th Annual Meeting of the CReATe Consortium
• Invitae Expands Network of Patients in Rare and Ultra-Rare Diseases
• An Interview with Craig Blackstone, M.D., Ph.D.
Connections
• Kentucky and Tennesse

-
Fall 2018
Letter from the President
Ambassadors Needed
Annual Conference in Pittsburgh, Pennsylvania
• Recap and Thank You
• Cell Therapy Update
• Transforming Remarkable Genetic Advances into a Path Toward Treatment for PLS and HSP
• PLS Research Projects Update
• PLS Research Updates
• Current Genetics Topics in HSP and Related Diseases and the Promise of ‘Big Data’
General Interest
• A Letter from Your Handicap Scooter
• RECUMBENT TRIKE IS FREEDOM FROM HSP!
• TRAVEL TURMOIL - A Compilation of Travel Woes
• I Touched the Water!
• SNAP OUT OF IT!
• It’s Time to Talk about Frustration
Medical & Research
• Sharing Chronic Illness Challenges
• Walking Test May Assist in Therapies and Trials
• Gene Therapy: Legal Issues (Extra Regulation will be relaxed.)
Connections
How To Help

-
Winter 2018
Letter from the President
Board Business
Fundraisers
• Kentucky, New York
Living with HPS / PLS
• Get Rid of Those Sacks of Potatoes
• The HSP Bladder
• The Chair That Gives You Freedom
• A Name You Need to Know
• TAKE AN EXTRA STEP!
• My Radio-Controlled SPF Race Car
• Two Great Mobility Aids
• Go Bag Checklist
Medical & Research
• DIS-ABILITY LAW: ADA Requirements for Restrooms
• Ongoing Collaboration between Foundations
• Gene Therapy – Our Latest Potential Treatment
Connections
• Austin, California, Illinois
Tina’s “Cane” Tips
SPF Partners with Invitae

2017
-
Spring 2017
Letter from the President
Fundraisers
Annual Conference in Atlanta, Georgia
• Agenda
• Speakers
• Registration
Medical & Research
• Disability Law: The CRISPR/Cas9 Patent Litigation Will Go On…
YOUR WHEELS ARE YOUR LEGS – Part II, Electric Scooters and Wheelchairs: How To Be “On A Roll” Safely And Efficiently
Selective Dorsal Rhizotomy for Hereditary Spastic Paraparesis in Children
Activities and Opportunities for Kids with Special Healthcare Needs
Tina’s Tips

-
Fall 2017
Letter from the President
Board Business
2017 Annual Conference in Atlanta, Georgia
• Recap
• Inheritance Patterns
• HSP and PLS Update
• CReATe
• Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP) Research Challenges
• Advances in PLS Research
Medical & Research
• HANDICAP AIDS: HOME, OFFICE, CAR, AND GARAGE
• How to Get the Most from Your Doctor
Connections
Tina’s Tips
Living with HPS / PLS
• “I’ve Fallen And I Can’t Get Up!”
How to Help

-
Winter 2017
Letter from the President
Board Business
Fundraising & Connections
• Kentucky, Virginia, California, Missouri, Maine, New York
Tina’s Tips…Special Edition
Up Close and Personal
• I’m Not a Cripple!
• Shine Your Heart
Medical and Research
• DISABILITY LAW: Copyright Fair Use
North East ALS Meeting in Clearwater Beach, Florida
YOUR WHEELS ARE YOUR LEGS – Part I Electric Scooters and Wheelchairs: How To Be “On A Roll” Safely And Efficiently
Annual Conference Registration

2016
-
Spring 2016
Letter from the President
Rare Disease Day
• “Dining to Donate” Fundraiser at Applebee’s Restaurant: One SPF Ambassador’s Experience
Annual Conference Itinerary, Speakers, and Registration
Medical and Research
• DISABILITY LAW: CRISPR Patent Litigation
Up Close and Personal
• Tek Robotic Mobilization Device - Part II
• 2016 Pediatric HSP Family Conference
• CASE REPORT: Thoracic Paravertebral Block, Multimodal Analgesia, and Monitored Anesthesia Care for Breast Cancer Surgery in Primary Lateral Sclerosis
• MNDs and UTIs
• Brain Donation
• Hip Flexor Pain or Spasms?
• TREAT YOUR FEET!
• A Tribute to My Dad, Malin Dollinger with HSP, focus on The Orange County Marathon May 1, 2016
• Malin’s HSP Story
Connections
Tina’s Tips

-
Fall 2016
Letter from the President
Board of Directors, 3 new members
Annual Conference in Chicago, Illinois
• CRISPR Update for Research and Therapy
• Advances in HSP and PLS - John K. Fink, MD
• Potato Pants - Lori Renna Linton
• Multi-Modal Neuro-Imaging in People with PLS - Sabrina Paganoni, MD, PhD
• PLS: The Way Forward
• How Do People Move: Measuring Function in Pediatric Patients with HSP
• 2016 Annual Conference and Plans for 2017
Medical and Research
• DISABILITY LAW: Copyright, An Overview
Connections
• North Texas, SPF Illinois, Austin
Tina’s Tips

-
Winter 2016
Letter from the President
Board Business
Connections
10 Things You Should Know about Emergency Preparedness
Up Close and Personal
• How I Got My Service Dog
• Ostrich: SPF Offers Support Even When Loved Ones Don’t “Get It”
• New TEK Mobility Device - Part I
• Be Your Own Best Advocate - Disability Law: §504 Rehab Act
Medical and Research
• SPF Board Awards Grants Worth $622,000
• Scientific Advances in Genetic Neurologic Diseases, Such as HSP and PLS: What Is CRISPR?
• Research Group on Motor Neuron Disorders
Tina’s Tips
Annual Conference Registration

2015
-
Spring 2015
Letter from the President
Board Business
Become an Ambassador
Annual Conference Registration
How Can I Help
Connections
• Georgia, SPF Illinois, North Texas
Accepting Your Diagnosis
Tina’s Tips
Exercise and You
• HSP and Exercise
• It’s All About Your Base!
• Life with Adaptive Sports
Up Close and Personal
• My Wheelchair Experience
• Be Your Own Best Advocate
• To Parents of Kids with HSP
• Earth Angels
• iPhone Medical ID
• Useful Tips
• Our Spirit Animal

-
Fall 2015
Letter from the President
International HSP Letter to Dr Rebecca Schule MD
Board of Directors - Board Business
Annual Conference, Seattle, Washington
• An Update on PLS and Future Directions for Research
• Genetics and Genomics of HSP and PLS
• Advances in HSP and PLS Small Steps and Big Strides
• Primary Lateral Sclerosis
• Putting the “ABLED” in Disabled…Your Perception is Everything
Connections
• SPF Illinois, Austin, Iowa
• TeamWalk in California
Rebecca Hart Finishes European Tour
Living with HSP/PLS
• PLS ... GETTING SPEECH BACK?
• Speech Generating Devices
• ADA at 25
Up Close and Personal
• Important Things To Know about Getting A Service Dog
Tina’s Tips

-
Winter 2015
2014
-
Fall 2014
Letter from the President
Connections
Exercise and You
• How To Use Exercise Bands at Home
Annual Conference in Dallas, Texas
• 10 Basic Financial Steps for Special Needs Caregivers
• SPF Funded Research: Great Donations Are Driving Great Science
• Clinical and Genetic Aspects of HSP in Children
• Therapy Development for People with Upper Motor Neuron Diseases
• Progress in Understanding Spastic Paraplegia – Dr. John Fink, MD.
• My Story, Having HSP and How Riding Has Made a Difference in My Life – Rebecca Hart
• My Canine Companion Journey – Jean Chambers
• PLS Cohort Study of Multicenter Oxidative Stress (ALS/PLS COSMOS) - Early Results of PLS COSMOS Projects - Hiroshi Mitsumoto, MD.
• Breakout Sessions: Q&A Session with John Fink, MD., and Q&A Session for Parents of Children with HSP
Up Close and Personal
• An Ounce of Prevention...
• ...A Pound of Cure (Pressure Sores)
• Pretty Shoes - A Personal Story About Foot Dragging

2013
-
Spring 2013
Letter from the President
2013 Annual Conference - Join Us in St. Louis
SPF Receives $24,000 from ExxonMobil
Paralympic Champion Rebecca Hart
How to be a State Ambassador
Up Close and Personal:
• My Life with HSP
• All In the Family
• It’s All Greek to Me
• My Story about a Grandmother, Mother, Brother, and Child with HSP
• It Is What it Is
Research Sound Bytes
Planned Giving

2012
2011
2010
Synapse Newsletters from 2000 - 2009
2009
2008
2007
2006
2005
2004
2003
2002
2001
-
Fall 2001
PLS Gene Discovered
New HSP Gene Discovered
What is HSP and why am I writing about it?
Comment on ALS2 Gene Discovery
From: Nailah Siddique Subject: PLS Study info
New England PLS/HSP Meeting
Connecticut PLS/Spastic Paraparesis Support Group Formed
Starting your Own Support Group
Fourth Annual HSP Conference
Georgia HSP/PLS Meeting
Update -- NORD's PLS Education Fund
Autumn in Carolina is Big Success
Spring Fling In Berkley Springs, West Virginia
Ohio PLS Connection a Success
Wonderful PLS Meeting in Washington State
Home Modifications
Itzhak Perlman Makes Music
PLS/HSP Resources
Calendar of Events
Subscriptions, Comments or Suggestions

