Spastic Paraplegia Foundation #HSPandPLS

08/19/2026

On AUGUST 23, 2026 at 2:00PM CT find out what Yakima, Washington + Vienna, Austria + a couple of potatoes have in common.

Jeff and Lori will join forces across two continents to introduce the Potato Pants Challenge and explore how one wonderfully silly idea can become an awareness tool for serious HSP/PLS diseases.

During this interactive SPF TALK, we'll laugh, brainstorm, take the challenge and explore how Potato Pants could grow into awareness events— and even FUNdraisers—to support medical research.

Join SPF TALKS as we talk about raising HSP/PLS AWARENESS. Register for Zoom Link at https://sp-foundation.org/get-involved/events/awareness-week-copy.html

08/12/2026

SPF Announces 2026 HSP/PLS Awareness Week: Six Days of Research, Connection, Action & HOPE! **August 23–28, 2026**
Patients, families, researchers and clinicians from around the world will come together August 23–28 to learn, connect and move HSP/PLS research forward.

Register in advance for AWARENESS WEEK on SP-Foundation.org
After registering, you will receive a confirmation email containing information about joining the meeting.

Here's the schedule!!
►August 23, 2026 at 2:00PM CT | POTATO PANTS —TAKE THE CHALLENGE! w/ Lori Renna Linton & Jeff Feen

►August 24, 2026 at 8:00AM CT | SP-CERN'S JOURNEY TOWARD TREATMENTS w/ Dr Marie Davis at University of Washington Medical School

►August 24, 2026 at 6:30 PM CT | SPECIAL SPF VIRTUAL RECEPTION
for Dr. Oscar Liang Qiang at Drexel (please see New Zoom Link below *)

►August 25, 2026 at 10:00 AM CT | PERK, AGING, STRESS & NEURODEGENERATION w/ Dr Vivek Pandey at University of Kentucky College of Medicine

►August 26, 2026 at 2:00 PM CT | NEUROSTIMULATION w/ Dr Rahul Sachdeva at University of Kentucky College of Medicine

►August 27, 2026 at 6:30 PM CT | FUNNERY EVENTS & OPEN FORUM

►August 28, 2026 at 12:30 PM CT | NU-9: PROTECTING UPPER MOTOR NEURONS w/ Drs. Mukesh Gautam, Peter Baas, Hande Ozdliner

Get ready for an exciting week of science, stories, community, connection—and HOPE!

The Spastic Paraplegia Foundation (SPF) is proud to announce 2026 HSP/PLS Awareness Week, taking place August 23–28, 2026. For six special days, patients, families, researchers, clinicians, healthcare professionals, advocates, and friends from around the world will come together with one shared purpose: to shine a brighter spotlight on Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) and keep moving the pathway toward treatments forward.

HSP/PLS are progressive rare neurological disorders that affect mobility, independence, and quality of life for thousands of individuals and families worldwide. Every diagnosis and every journey may be different, but one powerful thread connects this community:

We want answers. We want progress. And we want treatments.

SPF TALKS so You can Join the Movement!

Throughout Awareness Week, SPF will open its virtual doors for a special series of SPF TALKS—bringing the experts, the science, and the conversation directly to patients and families.

Featured programs will include internationally recognized researchers, physicians, patient advocates, and members of the HSP/PLS community sharing what's happening right now across research, clinical studies, emerging science, patient participation, and the search for meaningful treatments.

And we're going to have some fun along the way!
Awareness Week isn't only about science. It's about people.
It's about the patients who keep moving forward.
The caregivers and families who walk beside them.
The researchers who keep asking the next question.
The volunteers and supporters who turn ideas into action.
And the worldwide HSP/PLS community that continues to prove we are stronger when we work together.

"This is more than an awareness campaign," said Norma Pruitt, Executive Director of the Spastic Paraplegia Foundation. "Awareness is the first step—but action is what changes lives. Every patient story shared, every researcher supported, every family connected, and every partnership formed moves us closer to the treatments our community is waiting for."
Six Days. One Community. Lots to Talk About!

*****************************************************************

*JOIN US FOR A SPECIAL SPF VIRTUAL RECEPTION!
Celebrating Dr. Oscar Liang Qiang
Monday, August 24, 2026
6:30 PM Central Time
LIVE on Zoom, JOIN Us - Register on SP-Foundation.org
During SPF HSP/PLS Awareness Week, we're taking a special moment to celebrate someone who has helped move our understanding of HSP—and the search for future treatments—forward.
Please join the Spastic Paraplegia Foundation for a Virtual Reception honoring Dr. Oscar Liang Qiang as we thank him for his dedication, research, collaboration, and contributions to the HSP and PLS community—and wish him tremendous success as he begins an exciting new chapter in his career!

His work studying SPG4, corticospinal motor neurons, disease modeling, and HDAC6-targetable pathology has helped researchers better understand what may be going wrong inside the very neurons affected by HSP—and where future treatment opportunities may exist.

But this evening isn't a scientific lecture.
It's a CELEBRATION!
Come say hello.
Share your appreciation.
Wish Oscar well.
And help us recognize a researcher who has dedicated his talents to moving HSP science forward.
Patients, families, researchers, colleagues and friends—everyone is welcome!
Research moves forward because people choose to pursue the difficult questions.
Oscar, thank you for asking those questions—and for giving our community more reasons to HOPE.
We hope you'll join us to send him off SPF-style!

08/03/2026

SAVE THE DATES!
(August 23–28, 2026)
Spastic Paraplegia Foundation Announces 2026 HSP/PLS Awareness Week

Uniting a Week of Education, Research, and Hope for the HSP & PLS Community

07/13/2026

Download free HSP handbooks with information for parents and educators.

Our Kids and Teens Committee have created two booklets. One for parents of HSP children and one for educators to inform them about HSP children..

07/04/2026

Some people make an impact through their science. Others make an impact through their heart. Dr. Hande Ozdinler does both.

The Spastic Paraplegia Foundation was honored to welcome Dr. Ozdinler back to our 2026 HSP/PLS Conference, where she shared her remarkable insights into upper motor neuron biology and the exciting progress being made toward understanding—and ultimately treating—HSP, PLS, and ALS.

For years, Dr. Ozdinler has been one of the world's leading scientists dedicated to protecting the neurons that are lost in these devastating diseases. Her laboratory continues to push the boundaries of discovery, including promising work that has sparked hope through therapeutic approaches such as NU-9, while always remaining grounded in rigorous science.

What makes Dr. Ozdinler especially treasured by our community is not only her brilliance, but her compassion. She takes time to listen, to answer questions, and to remind patients and families that they are true partners in the journey toward better treatments.

Thank you, Hande, for your friendship, your unwavering dedication, and for standing beside the HSP, PLS, and ALS communities. Your passion inspires all of us, and we are grateful to have you as part of the SPF family.

Together, we're building a future where scientific discovery becomes meaningful therapies. SpasticParaplegia World Spastic Paraplegia Foundation, Inc SPF TALKS

07/04/2026

For more than two decades, Dr. John K. Fink has been an unwavering leader, mentor, and trusted advisor to the Spastic Paraplegia Foundation and the global HSP/PLS community. It was a privilege to once again welcome him to our 2026 HSP/PLS Conference in STLMO.

For countless families, Dr. John K. Fink is the physician who helps provide answers, hope, and a deeper understanding of these complex disorders. His pioneering work identifying HSP genes, defining disease mechanisms, and advancing clinical care has helped shape the field and inspired generations of researchers.

As our Medical Advisor since the Foundation's earliest days, his wisdom and commitment continue to guide SPF's mission. Today, with unprecedented momentum in biomarkers, natural history studies, clinical trial readiness, and emerging therapeutic approaches, the scientific foundation built by leaders like Dr. Fink is becoming the launchpad for the next generation of treatments.

Thank you, Dr. Fink, for your decades of dedication, your partnership, and for continuing to stand with the HSP and PLS community as we work together to turn scientific discovery into meaningful therapies. SPF TALKS SpasticParaplegia World Spastic Paraplegia Foundation University of Michigan

07/04/2026

The momentum didn't end in St. Louis—it continues today.

The 2026 Spastic Paraplegia Foundation HSP/PLS Conference brought together an incredible community of patients, families, clinicians, researchers, NIH, C-Path, industry, and advocacy leaders, all united by one shared goal: accelerating therapies for people living with HSP and PLS.

Now we're excited to share that all conference presentations are available on the SPF YouTube Channel for anyone who wants to learn, revisit a favorite session, or share this valuable information with others.

Whether you're interested in:
-- Emerging research and genetics
-- Biomarkers and clinical trial readiness
-- New therapeutic approaches
-- Rehabilitation, technology, and symptom management
-- Living well with HSP and PLS..there is something for everyone.

This is more than a collection of presentations. It's a reflection of a growing movement—one where collaboration is replacing isolation, ideas are becoming action, and hope is being transformed into a roadmap toward treatments.

If you couldn't join us in person, now you can experience the conference from wherever you are. If you were there, we invite you to relive the conversations, discoveries, and inspiration that made this year's conference so special.

Visit the SPF YouTube Channel, subscribe, and share the videos to help expand our reach. Every view helps educate, connect, and strengthen the movement. Together, we're not just imagining a better future for HSP and PLS—we're building it. 💙 SPF TALKS SpasticParaplegia World Spastic Paraplegia Foundation

The Spastic Paraplegia Foundation organizes various events, including the Annual Conference and SPF Talks, which are recorded and made available to the public. Visit our website at www.sp-foundation.org and become a member with SPF. Please register with us. It's free... https://sp-foundation.org/new...