SPF Talks
Rare Disease Day & Open Forum
Saturday, February 28, 2026 at 2:00 pm CST
Bring your questions!
AUDIENCE: This SPF TALKS is intended for EVERYONE.
INVITATION: You are invited to a Zoom meeting on Rare Disease Day and a OPEN FORUM to Discuss ANYTHING HSP and PLS. It is also the kick off to the streaming of Watch Me Walk.
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 $25 at sohoreg.org.
WHEN: February 28, 2026, Saturday, 2:00 pm Central Time
REGISTER: You must register in advance for this meeting: CLICK REGISTER BUTTON. After registering, you will receive a confirmation email containing information about joining the meeting.
More information
Rare Disease Day is raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Go to rarediseaseday.org.
Watch Me Walk is performed by Anne Gridley. It’s “the show [Anne] never wanted to write”—about her experiences since being diagnosed with Hereditary Spastic Paraplegia (HSP), a rare degenerative neurological disease which her mother and grandmother also had. The play is part observational comedy, part bonkers family history, part critique of our trainwreck of a healthcare system.
It is going to be available to stream online from February 28, 2026 to March 7, 2026. Tickets are $25 at soho.rep.org.
