Behind the Mission - October 2026
Publish Date: November 2, 2026
Welcome to our first edition of Behind the Mission, a monthly look at the research, people, partnerships, and work helping move our mission forward.
October was an exciting month for The SPATA Foundation! From research models arriving at Florida State University to an incredible $51,093 raised at our annual golf fundraiser, we're seeing the results of continued collaboration, dedication, and community support.
But progress doesn't always come with a major announcement. So much happens behind the scenes between research milestones, and through this monthly series, we want to give families and supporters a closer look at the work being done, the challenges we're navigating, and what's coming next.
Research Updates
Progress in our Gene Therapy Research Program
There's a lot happening behind the scenes with our research collaborators at Florida State University (FSU), UT Southwestern, Mass General Brigham, and other institutions.
Mouse models: Specially developed mice from Jackson Laboratory have arrived at FSU and will help researchers better understand the disorder and evaluate potential treatments.
Brain organoids: Tiny models of developing brain tissue are growing in the laboratory. These will allow researchers to study how SPATA-related genetic changes affect brain cells.
Gene therapy: Researchers are preparing to investigate whether providing working copies of SPATA5 or SPATA5L1 can improve cellular function.
Fruit flies: Additional genetic models are in development to help scientists study how these disorders affect biological processes.
Medication testing: FSU is also exploring potential small-molecule treatments, separate from our existing drug repurposing project with Unravel Biosciences.
The FSU team is also connecting with researchers in the Czech Republic to explore opportunities for collaboration.
Unravel Biosciences: Update Coming Soon
We're expecting additional reporting from our drug repurposing project in the coming weeks and will share an update when more information is available.
Partnership with Fox Scientific Consulting
The SPATA Foundation has partnered with Fox Scientific Consulting to help strengthen our research strategy and identify opportunities to advance SPATA5 and SPATA5L1 research. Our current focus is conducting a gap analysis to evaluate existing research, resources, and tools available for both disorders. This process will help us identify what's already available, where critical gaps exist, and what additional resources may be needed to support future research and therapeutic development.
The findings will help guide our research priorities, inform future collaborations, and ensure we're making strategic decisions as we work toward potential treatments.
**While this research is still in its early stages, these models and experiments are important steps toward understanding the disorders and evaluating possible treatments.
Foundation Operations
As our research programs grow, we're also working to strengthen the organization supporting them.
This month, we began working with a nonprofit consultant to review our policies, improve strategic planning, strengthen fundraising efforts, and support future Board development.
Family & Community
A SPATA Halloween
We loved seeing our SPATA warriors dressed up for Halloween! From superheroes to princesses and everything in between, it's always special to see our families sharing these moments. Take a look at some of our adorable SPATA trick-or-treaters!
Growing our Worldwide SPATA Family Network
Our SPATA Family Network helps connect families, build our Worldwide Family Map, and keep our community informed about research and Foundation activities.
If your family is affected by SPATA5 or SPATA5L1 and you haven't registered, we'd love for you to join!
Haven't joined yet?
We encourage all families affected by SPATA5 or SPATA5L1 to register through our Family Network.
Please note: The SPATA Family Network is separate from the official patient registry. It is designed for community connection, outreach, and communication.
Fundraising & Development
$51,093 Raised for SPATA!
Luca George's Papaw Cary's annual golf fundraiser raised an incredible $51,093! A huge thank-you to Papaw Cary and everyone who sponsored, donated, participated, or volunteered to make this event possible.
What's Coming Next?
We're preparing several new ways for families and supporters to get involved:
November 10: Our year-end giving campaign launches, along with the SPATA Impact Circle monthly giving program. Throughout the campaign, we’ll share why continued research matters, highlight the progress being made, and invite our community to help support the next steps. Keep an eye on our Facebook Page and we encourage everyone to share our posts!
Family Fundraising Toolkit: We're developing resources to help families organize their own fundraisers, with a planned release before the end of 2026 or at the beginning of 2027.
Continued fundraising is especially important as we work toward fulfilling our $416,358 three-year funding commitment to our gene therapy research collaboration with Florida State University.
In October, we made our first annual payment of $138,786, leaving $277,572 in planned funding over the next two years. Our next funding milestone is October 2027, when another $138,786 is scheduled to support the continuation of this research.
Financial Snapshot
Transparency is an important part of our commitment to SPATA families and supporters. In addition to the Annual Financial Reports and tax filings available on our website, we're introducing monthly financial snapshots to provide a clearer picture of the funds received and how they're being used to advance our mission.
October Financial Overview
Donations/Contributions Received | $4,354.58 |
Total Expenses Research Funding Other Expenses | $139,250.88 $138,786.00 $464.88 |
October's expenses reflect a major planned research investment funded through donations raised over time, including prior fundraising efforts. This payment represents an important milestone in our ongoing research commitments.
Research payments are included in total expenses and are not an additional expense.
Looking Ahead
November 4 — Research Teams Meeting
Researchers from FSU, Mass General Brigham, and Dr. Michael Buszczak of UT Southwestern will meet to discuss research progress, share updates, and plan next steps.
Foundation President Mariah George will attend the meeting alongside fellow SPATA parent Cheyenne Wilamoski, who will be joining in support of our shared advocacy efforts.
We're looking forward to hearing the latest research updates, asking questions, and continuing to advocate for our children's futures.
Questions & Feedback
Behind the Mission is about more than sharing updates. It's about keeping our families connected, informed, and involved in the work we're doing together.
Have questions about our research programs? Ideas for family resources? Suggestions for future updates? We'd love to hear from you!
Thank you for being part of this journey and helping us work toward more answers, more possibilities, and a brighter future for SPATA families.
Whether you're sharing our updates, participating in research, organizing a fundraiser, or making a donation, every contribution helps move our mission forward. We're grateful for the many ways our community continues to show up for SPATA families.
The SPATA Foundation