SPF Talks
SPF TALKS is an outreach effort talking about subject matters of interest to people with HSP or PLS.
The SPF TALKS will be Zoom meetings or webinars on how people with disabilities and caregivers can identify, obtain, and use helpful information. SPF TALKS will support a wide range of topics, designed to help with lifestyle issues, and daily and livable concerns.
Each SPF TALKS will feature speakers enthusiastic about a topic that you may also find interesting and helpful, or we’ll have open forums to discuss a variety of subjects. Information presented on SPF Talks is not intended or implied to be a substitution for professional medical advice, diagnosis, or treatment. Save the dates!
Emails will go out to our membership a few weeks before a talk is scheduled. If you are not a member JOIN HERE. If you have a topic you would like to present EMAIL US.
SPF TALKS are recorded and on the SPF YouTube Channel shortly after: CLICK HERE or below.
Upcoming SPF Talks
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Rare But Relentless — Around the World, Together for HSP & PLS
Join the Global SPF TALKS Rare Disease Day Open Forum, a historic gathering uniting the HSP & PLS community across countries, cultures, and languages. Hosted by the Spastic Paraplegia Foundation, this worldwide Zoom event will bring individuals, families, advocates, clinicians, and researchers together for a collaborative conversation of hope, progress, and shared strength — because we have far more in common than we are rare. Following the global session, participants will move into Zoom Breakout Rooms by country and language to meet, connect, and discuss HSP & PLS in their native languages, creating space for dialogue and new international bonds. Together, we are proving that rare has no borders and that a relentless global community can accelerate awareness, research, and support for everyone affected.
This interactive session will bring together patients, families, researchers, and advocates for an open dialogue about lived experience, research advancements, and the urgency of accelerating the development of therapies for HSP and PLS. The program is designed to amplify patient voice, foster national connection, and translate awareness into action—aligning closely with the streaming presentation of Watch Me Walk starting February 28 - March 7, 2026. Tickets are on sale NOW for $25 at sohoreg.org.
SPF Talks on YouTube Channel
View all of the past SPF Talks under Playlists on the SPF YouTube Channel.
Presentations From Past SPF Talks
Here are presentation materials and information that were shared with us for your use.
Click on the DATE for the presentation document and go to the SPF YouTube Channel under Playlists - SPF Talks to watch the video of the presentation.
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SPF TALKS with Sabrina Paganoni, MD, PhD., and Erica Scirocco, MD. with updates from the 36th Annual International ALS/MND Conference in San Diego, CA on December 6, 2025.
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SPF Talks with with Javier Tuel, Personal Trainer
Believe Stronger App
Inclusive Fitness 🟢 Lifestyle ⚫ CommunityHelping you move better, think sharper, and live stronger...no matter your age or ability.
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Sherry Brady, California ambassador, presenter
I wanted to share information about a device that has been especially helpful for me: the dnsys X1 Exoskeleton and more.Sherry has a website intended to open the door to options for people with uncomplicated HSP, or spasticity that primarily affects the legs - https://sites.google.com/view/hsp-sandiego/home
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SPF Talks with Dr. Bianca Martinez on Spasticity Management
An overview of the options available to treat spasticity and improve walking in patients with HSP and PLS. We discussed oral medications, the use of orthotics, botulinum toxin injections, phenol chemoneurolysis, and cutting edge techniques such as cryodenervation.
