Spastic Paraplegia Foundation #HSPandPLS

04/07/2026

Let’s Talk. Let Us Be Heard. Our Voices Matter. Join SPF TALKS OPEN FORUM. April 7 at 6-8:PM CT. PreRegister! Link in Comments!

Your story matters—every step, every challenge, every breakthrough.
Whether you’re living with HSP, PLS, any SPG subtype, or still searching for answers… this space is for YOU.

💬 Share your lived experience
💬 Speak what others may be afraid to say
💬 Help someone feel less alone
💬 Learn, connect, and lift each other up

This is more than a conversation—it’s a community built on courage, honesty, and hope.

Join the conversation. Be heard. Help light the way for someone else.

03/28/2026

Bring the Whole Family - This Conference is for Them, Too

The 2026 SPF HSP/PLS Conference isn’t just for adults — it’s for kids, grandchildren, teens, students, young adults, and siblings (the SPF NEXTGEN! SUMMIT) who are part of this journey every single day.

💙 Because they deserve to:
✨ Feel seen and understood
✨ Meet others their age who “get it”
✨ Learn in ways designed just for them
✨ Be inspired by the future they’re helping shape

From meaningful connections to age-inclusive experiences, this is a place where every voice in the family matters.

✨Make it a family experience. Make it unforgettable.
✨ Bring your children and grandchildren. Bring their siblings.
✨ Bring their curiosity, their questions, and their hope.
✨ And the discounted registration is extended to April 30, 2026
✨ Join us together. Grow together. Move forward together.

Let your voice be heard building a Roadmap to Health, Therapies & Wellness. Register today!

SPF TALKS SpasticParaplegia World Spastic Paraplegia Foundation

03/28/2026

BIG NEWS FOR OUR COMMUNITY! Share this with family and friends. The Spastic Paraplegia Foundation is now on Walmart SparkGood through Walmart.com 💙

That means your everyday shopping can now help fuel research and bring hope to families affected by HSP & PLS.

It’s EASY to make an impact:
✔️ Shop on Walmart.com
✔️ Select Spastic Paraplegia Foundation as your charity
✔️ Give back—automatically

Every purchase. Every dollar. Every step forward.

Together, we are accelerating research, advancing treatments, and building a stronger, more connected community.

Start shopping. Start giving. Start making a difference.
SpasticParaplegia World SPF TALKS

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03/13/2026

NIH-science meets the HSP/PLS community at the 2026 SPF HSP/PLS Conference. We’re excited to announce that Srikanth Ranganathan, Ph.D., Program Director at the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, will be joining us at the 2026 SPF HSP/PLS Annual Conference in St. Louis June 15-17, 2026.

Dr. Ranganathan plays a key role in shaping NIH research funding for neurodegenerative diseases—including Hereditary Spastic Paraplegia—making his insights incredibly valuable for our scientists, clinicians, and patient community. Attendees will gain a first-hand look at how federal research priorities, emerging programs, and collaborative initiatives are driving the search for treatments.

1st Discount Registration Open until March 31, 2026; then rates will increase - JOIN NOW!! LET YOUR VOICE BE HEARD BUILDING A ROADMAPTO HEALTH, THERAPIES & WELLNESS
SPF TALKS SpasticParaplegia World

03/03/2026

Watch Me Walk + Alinker= Big Win for the HSP/PLS Community
We’re excited to share a special offer that grew directly out of the powerful performance “Watch Me Walk” and our collaboration with Alinker and Soho Rep.

When you purchase an Alinker and use the code SOHOREP 200 at checkout:
• You get $200 OFF your Alinker
• $50 is donated to the Spastic Paraplegia Foundation (SPF)
• $50 is donated to Soho Rep, the theater that produced Watch Me Walk
This is a fantastic way to:
• Support your mobility and independence
• Support SPF’s mission for people with HSP/PLS
• Support disability-centered art and storytelling
How to use the code:
1. Visit the Alinker website
2. Select your Alinker
3. Enter SOHO REP 200 at checkout

Watch Me Walk, streaming online for only $25 through the theater’s website until March 7, 2026. It’s a powerful, honest, and often funny look at disability, HSP, resilience, and how we relate to one another—highly recommended for everyone in the HSP/PLS and wider disability, mobility-impaired community.

Please share this post with anyone in the HSP/PLS community, caregivers, and clinicians who might benefit from an Alinker and want to support SPF/SOHO Rep/ Anne Gridley at the same time. (links in the comments)
The Alinker USA & Canada Soho Rep.

03/03/2026

Hey - Read this NOW and then SHARE it!!

A must watch!

I got a ticket and watched “Watch Me Walk” as Anne Gridley’s theater show streams until the 7th March.

Please, do not miss it.

Everybody who lives with disabilities SHOULD watch it, everybody else MUST watch it.

This is a comprehensive, personal and deeply emotional piece of theatre around disability, rare diseases like HSP, how society treats you, what the medical system is like in its essence.... and so much more. Anne is funny, clever and intensely on point. You will recognize a lot!

There is one song that her co-player does about the history of how people with disabilities have been treated through out time, that was gut punching, and good to know facts!

so join and do not miss this unique event!

🎟️ Tickets on sale now for streaming on-demand from Feb 28 - Mar 7 at www.sohorep.org

stream over the weekend and then join us:

Monday 2nd March at 4pm PST / 7pm EST.
ZOOM link ​ https://us02web.zoom.us/j/6396468417
Anne Gridley and her theater director Eric Ting will join us there!

and if $25 is prohibitive for you, we’ll reimburse you the $25 when you attend the ZOOM call on Monday 2nd March where Anne Gridley and Eric Ting will be present for a conversation, shares and questions about “Watch me Walk”

get a special deal
Click here to get your $200 off and support people with HSP (USA) https://www.thealinker.com/?utm_source=Non-US+Segment&utm_medium=email&utm_campaign=EXTRA+-+reminder&utm_id=01KJDPHFVQZ6GP5R7YC4A04P0F&utm_term=Click+here&utm_customer=&_kx=7aTCiOpCMFddH6yRwyDJ-4PPNPhyJWyAxw8yQzFeaEQ.VJ5J5G

03/03/2026

03/02/2026

Congratulations to Dr. Liang (Oscar) Qiang and the Drexel University team on the publication of their important SPG4 manuscript in Cell Reports.

This SPF-supported research identifies HDAC6 as a druggable target in SPG4 HSP — a significant scientific advance that moves the field beyond understanding disease biology and toward therapeutic intervention.

For families living with Hereditary Spastic Paraplegia, this is more than a publication. It represents progress along a realistic translational pathway.

HDAC6 is now a druggable target in SPG4 HSP — thanks to Dr. Liang Qiang and SPF-supported research.
Real science. Real hope. Real pathway to therapies.

We appreciate all of our generous donors supporting this work and look forward to continued collaboration to accelerate the journey from discovery to treatment.

10/01/2025

The UNIVERSITY OF MICHIGAN on the 1st Tuesday of EVERY Month has a Zoom Meeting with Dr. Fink on PLS and HSP

Everyone is welcome to Join the Zoom Meeting. Dr. Fink will discuss HSP/PLS and answer your questions.

Here are the upcoming dates:
Tuesday, November 4th
Tuesday, December 2nd

PLS Club Monthly Zoom Meeting
6:00 pm - 6:30 pm (EST)
Zoom Link: https://umich.zoom.us/j/93805216054
Passcode: 774744

HSP Club Monthly Zoom Meeting
6:30 pm - 8:00 pm (EST)
Zoom Link: https://umich-health.zoom.us/j/95675246934
Passcode: 935755