JULY 2025 ANNOUNCEMENTS

2025 SPATA Foundation Family Conference

Registration for the 2025 SPATA Foundation Family Conference is now OPEN! We'll be hosting a Family Conference this November 7,8, and 9th in Boston, Massachusetts, USA!

ALL INFO INCLUDING REGISTRATION CAN BE FOUND HERE: https://www.spatafoundation.org/2025-conference

The conference will be held on November 8th at DoubleTree by Hilton Boston Logan Airport Chelsea. Dates say 7, 8, and 9th because we will have a hotel block for nights of the 7th and 8th.

Details are still coming together, but we plan to present information regarding research and specialized topics that families would like to discuss.

If you plan to attend, you MUST register by OCTOBER 1ST. Once filled out you will receive a booking link for the hotel if you'd like to stay there at a discounted rate.

Please feel free to ask any questions!

SPATA5L1 Topiramate Study

Dr. Kruer from Phoenix is recruiting SPATA5L1 patients to study how Topiramate might be able to help our children.

Kruer’s lab has been running their own drug-repurposing analysis, and identified Topiramate as a lead compound for patients with SPATA5L1 mutations. Topiramate is already FDA-approved for pediatric epilepsy and migraines.

If your child is affected by SPATA5L1 and you would be interested in trying Topiramate and being part of this study by going to Phoenix (at least twice) for data collection, you can email Peter Skidmore at ptskidmo@asu.edu.

A few things to note:

• This is for SPATA5L1(AFG2B) patients ONLY. Dr. Kruer’s lab has primarily focused on SPATA5L1 in the past, and at this time only has the capacity to conduct this research for SPATA5L1.

• Please understand that The SPATA Foundation does not have anything to do with this study. It is completely separate from the Unravel Drug Repurposing study and is a private venture by Dr. Kruer that we have been asked to help recruit patients for.

• This is open to families from all countries, but please understand with insurance and travel it may be difficult for non-US families to participate.

We understand some families have tried Topiramate for seizures and may have mixed experiences with it. For families who haven’t tried it and may be interested, this would be a good opportunity to try it while helping us gather data.

If you’re interested in participating or have questions please email Peter Skidmore ptskidmo@asu.edu who is working with Dr. Kruer.

Please don’t let financials prohibit you from participating. If you’d like to participate there may be resources to help.

Unravel Drug Repurposing

This study is taking longer than expected due to issues with the tadpole models. Please understand this is science and unforeseen hurdles do happen!

Unravel is currently screening 6 drugs for potential treatment. Each drug has to go through 3 phases: Toxicity Screen, Initial Efficacy Screen, and Second Efficacy Screen.

SPATA5 Status: All drugs have been through toxicity screening and the initial efficacy screen. Next step is the Second Efficacy Screen.

SPATA5L1 Status: All drugs have been through toxicity screening. Next step is the Initial efficacy screen.

The team has let me know they are seeing some promising results in regards to symptoms. Once all screenings are done they will provide us with a report where we can then release information to families about what they've found.