The SPSRF Newsletter - February 2026
- The SPSRF Staff
- 2 days ago
- 3 min read
 We have a lot of exciting updates to share with you today. Here’s what’s happening:
 Save the Date: 2026 SPS Symposium - June 13–14!
We are thrilled to announce that the 2026 SPS Symposium is just around the corner!
Block out your calendars for June 13–14, 2026, as we gather in Aurora, CO (Denver area) at the University of Colorado Anschutz Medical Campus. Whether you’re attending in person or virtually, we want to make sure you don’t miss this pivotal event for the SPS community.
Registration will open on our website on Friday, March 6, for both in-person and virtual attendees. We’re finalizing the agenda with leading researchers and presenters, and will share those details with you soon. |
YOUR DONATION ENSURES THE SPS SYMPOSIUM REMAINS FREE TO ATTEND, EMPOWERING RESEARCH AND A PLATFORM TO CONNECT. EVERY DOLLAR MAKES A DIFFERENCE! |
 Logistics for the SPS Symposium: Hotel & Shuttle Information
We’re happy to share that SpringHill Suites by Marriott Denver at Anschutz Medical Campuswill be our hotel partner for the symposium. The hotel is located at:
SpringHill Suites by Marriott13400 E. Colfax Avenue, Aurora, CO 80011
The hotel will also provide shuttle service to and from the CU Medical Campus. As we’ve done in previous years, we’ll be partnering with NORD, which will again administer financial assistance for travel-related expenses.
We’re waiting for the registration links for discounted hotel rooms and travel-related financial assistance from NORD. As soon as these become available, we’ll share them with you, so stay tuned!
 Introducing Alicia McCabe: Our New Head of Development
We are thrilled to introduce Alicia McCabe, our new Head of Development. With over 30 years of leadership experience across both the consumer products industry and nonprofit organizations, Alicia is uniquely equipped to advance our mission.
Alicia began her career in higher education development and has spent decades leading teams and driving growth in the CPG sector while remaining deeply committed to nonprofit service. Now, she's bringing her professional expertise and lifelong dedication to service to The SPSRF, focusing on funding research and advancing our goal: a world where all individuals with Stiff Person Syndrome receive prompt diagnoses, compassionate care, effective treatments, and ultimately, a cure.
If you’d like to connect with Alicia, feel free to reach out directly at development@stiffperson.org.
 Watch The SPSRF Podcast Featuring Tara Zier & Scott Newsome
In our January 2026 Podcast, Tara Zier and Dr. Scott Newsome discuss the SPS Global Registry and its significance for understanding SPS. Learn about the importance of patient-reported outcomes and how longitudinal data can change the course of SPS research. Dr. Newsome also clarifies misconceptions about what a registry is and its key role in leading to better treatments and FDA approvals.
You can watch the full episode here: January 2026 Podcast.  Rare Disease Day: Launching Our 'Rare, Like You' Campaign
On February 28th, we’re celebrating Rare Disease Day with the launch of our 'Rare, Like You' Campaign, which will run through SPS Awareness Day on March 15th. This is a pivotal time for us to amplify personal SPS stories and drive awareness for those living with rare diseases.
Alongside the campaign, we’ll be releasing our February 2026 Podcast featuring Neil Mathis, Head of Communications at SPSRF, and Stephanie Riordan, Senior Director of Patient Programs at EveryLife, who discuss how to craft powerful personal narratives that raise awareness, influence policy, and empower individuals within the rare disease community.
This episode will be available on February 28th here: February 2026 Podcast.  Reminder: Join the SPS Global Registry
The SPS Global Registry serves as a pivotal resource for uniting the global community, centralizing data, and advancing SPS research.
Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate in the rare disease community. Learn about the SPS Global Registry
 Rocco Merolli’s Upcoming Fundraising Events
A huge thank you to Rocco Merolli, whose November 2025 fundraiser raised one of the highest totals in SPSRF history!
And the best part? He’s planning even bigger and better events to continue raising funds for SPS research throughout 2026!
Rocco's looking for passionate community members who want to get involved and help drive awareness and funding. If you’re interested in partnering with him for future events, reach out to Rocco and start brainstorming! Thank You for Ongoing Support
Thank you for your ongoing support of the SPSRF and the SPS community. Every act of support - every dollar, share, and show of encouragement - builds the future we’re fighting for.
We couldn’t do this without you!
With gratitude, The Stiff Person Syndrome Research Foundation |
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