SPF Announces 2026 HSP/PLS Awareness Week: Six Days of Research, Connection, Action & HOPE!
Patients, families, researchers and clinicians from around the world will come together August 23–28 to learn, connect and move HSP/PLS research forward.
To register for ALL Awareness Week activities
(click the button below)
Note once you register, you can use the SAME invitation link on each day.
SPECIAL SPF VIRTUAL RECEPTION for Dr. Oscar Liang Qiang at Drexel
August 24, 2026 at 6:30 PM CT.
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!
There is a separate/different zoom link for the Special Reception
August 23–28, 2026
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."
Together, we're moving research forward. Moving lives forward. Join the Movement!
Because HOPE is powerful—but HOPE with ACTION can change the future.
Awareness Week Schedule
August 23 -28, 2026
Six Days. One Community.
Lots to Talk About!
►August 23, 2026 at 2:00PM CT | POTATO PANTS —TAKE THE CHALLENGE! w/ Lorri 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
Throughout the week, participants will have opportunities to:
Meet and learn from leading researchers and clinicians working to understand HSP/PLS and develop future therapies.
Join SPF TALKS and hear about exciting research and discoveries in language patients and families can understand.
Hear the voices of patients, caregivers, and families whose lived experiences inspire and guide the work.
Discover what's happening in HSP/PLS research and why today's discoveries could help shape tomorrow's treatments.
Learn how patients can become research partners through studies, registries, surveys, advocacy, and other opportunities.
Connect with the worldwide HSP/PLS community and discover that no matter where you live, you are part of something much bigger.
Have some fun! Because building community, celebrating one another, and creating awareness can—and should—bring some smiles along the way.
Awareness Creates Understanding. Understanding Creates Action. Action Creates Change.
Whether you were diagnosed yesterday or decades ago, are caring for someone you love, are conducting research, treating patients, supporting the rare disease community—or simply want to understand HSP/PLS better—there is a place for you during SPF HSP/PLS Awareness Week.
So mark your calendar.
Invite your family.
Tell your friends.
Share our posts.
Join an SPF TALK.
Ask questions.
Learn something new.
And help us make some noise for HSP/PLS!
About the Spastic Paraplegia Foundation
The Spastic Paraplegia Foundation (SPF) is a nonprofit patient advocacy organization dedicated to improving the lives of individuals and families affected by Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). Through medical research, education, advocacy, awareness, patient support, and collaboration, SPF works to accelerate progress toward meaningful treatments and, ultimately, cures.
#HSPandPLS #HSPAwareness #PLSAwareness #SPFoundation
#HSPandPLSAwareness #RareDiseaseResearch #UpperMotorNeurons #ResearchToTreatments #HopeThroughResearch #wheelchairtobicycle
