SPF November 2025 Update

Ambassadors,

Here is a SPF November 2025 Update for your use and distribution to your local members.

Dina Landphair

sp-foundation.org

SPF November 2025 Update 🦃

"You are NOT defined by your diagnosis"

"Movement is Medicine" - Javier Tuel, personal trainer

SPF ANNUAL CONFERENCE

The SPF Annual Conference was in Washington DC on October 23 - 24, 2025 and now on YouTube - Click Here

2025 Annual Conference Program

THURSDAY

8:30am - WELCOME TO WASHINGTON DC SPF WARRIORS

9:00am - Dr. Craig Blackstone

9:45am - Dr. Michelle Campbell

10:30am - HSP/PLS Patient History Survey

11:15am - Javier Tuel

12:00pm - Lunch

1:30pm - Dr. Darius Ebrahimi-Fakhari

2:15pm - Dr. Srikanth Ranganathan

3:00pm - Dr. Collin Hovinga

3:45pm - Dr. Sheri Schully

4:30pm - Members of Congress | Rare Disease Caucus

5:00pm - Day 1 Wrap-Up & Reflections

FRIDAY

8:30am - Welcome Back

9:00am - Dr. Walter J. Koroshetz

9:45am - Dr. John Fink

10:30am - Dr. Peter W. Baas

11:15am - Javier Tuel

12:00pm - Lunch

1:15pm - Special Recognition and Quilt Auction

1:30pm - Dr Hande Ozdinler

2:15pm - Dr. Liang Oscar Qiang

3:00pm - Dr. Richard Silverman

3:30pm - Dr. Richard Novak

4:00pm - Lindsay Perlman

4:30pm - Members of Congress | Rare Disease Caucus

5:00pm - Closing Reflections & Call to Action

The focus of the conference was on NIH, FDA, Pharmaceutical, and C-Path. The biggest announcement was the SP-CERN (Spastic Paraplegia Centers of Excellence Research Network) was awarded a grant for $8.4 Million from NIH to continue research and work on HSP and PLS for the next 5 years. See LinkedIn post here.

Past Annual Conferences and much more are available on the SPF YouTube Channel.

Believe Stronger App by Tuel Shed Training is an app with exercise workouts for everyone (3 different levels) and is FREE. It will be available January 15, 2026.

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MARKETING

October 17th is World HSP & PLS Day - SPF joined 19 organizations and 17 countries to officially recognize October 17th as World HSP & PLS Day. Learn more about it, watch a video (available in 9 different languages). That day was an all day Zoom Meeting and countries from all over the world joined to recognize the day. Save the date for next year.

SPF is working on scheduling upcoming SPF Talks. Details will be on the website soon: SPF Talks.

Past SPF Talks are available on the SPF YouTube Channel.

EDUCATION & AMBASSADORS

SPF conducted a survey to collect valuable information about living with Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS) from individuals and families directly affected by these chronic rare diseases. Almost 800 surveys were submitted. A report and presentation about the survey were given at the Annual Conference in Washington DC on October 23-24, 2025 and is available on the SPF website HERE.

The Education & Ambassador Committee has joined the SPF Joint Committee Meeting on the first Thursday of the month. Click here to REGISTER.

FUNDRAISING

SPF has raised $1,080,437 to date with a goal of $1,600,000.

The Annual conference raised $41,500 in fundraising pledges.

The current fundraiser is the 5K Run Walk Roll. It is staying open until December 31st and has raised just over $87,000.

SPF End of the Year Campaign is now until December 31st. This year Frank Davis and other generous contributors are matching donations up to $290,000. This means every dollar donated is doubled. Make every dollar count.

Giving Tuesday is the Tuesday after Thanksgiving (Tuesday, December 2nd this year) and is included in the matching donations. Learn about Giving Tuesday here.

There are many ways to donate, CLICK HERE.

THANK YOU SO MUCH to everyone who’s donated money, given their time, or pitched in however they could. Your support means everything, and we wouldn’t be able to do any of this without you.

ADVOCACY

SPF has several Advocacy Campaigns. Learn more HERE or click on them below..

Safer Accessible Parking & More Economical Paratransit

Support Sensible Wheelchair Repair Reform

Ask Your Legislator to Join the Rare Disease Caucus

By July 2026, medical equipment such as examination tables and chairs, weight scales, mammography equipment, x-rays and other imaging and radiology equipment are required to be accessible. See this blog for more information: Accessible Medical Equipment Changes and Requirements

See more under Advocacy on the SPF website.

RESEARCH

SPF received 36 Research Grant proposals, pursuing $4.8 Million but SPF only raised $1.5M in 2024. Every donation matters. An announcement of the approved grants will be out soon.

Critical Path Institute’s Translational Therapeutics Accelerator awards $150,000 Grant to Support a Novel Drug Approach in Hereditary Spastic Paraplegia. CLICK HERE to learn more.

SP-CERN (Spastic Paraplegia Centers of Excellence Research Network) was awarded a grant for $8.4 Million from NIH to continue research and work on HSP and PLS for the next 5 years. See LinkedIn post here.

The next SPF Joint Committee Meeting is Thursday, December 4th at 7:00pm CST. Click here to REGISTER. The meetings are on the 1st Thursday of the month and EVERYONE is welcome to join to learn what is happening in the world of HSP/PLS.