Dear Friends and Supporters,

We are at a remarkable moment in the fight against IQSEC2 disease. Dr. Andrew Levy and his collaborators have just published research showing that gene therapy can improve outcomes in mice with IQSEC2 mutations. Mice treated with a healthy copy of the gene experienced fewer seizures, stronger growth, and improved social behaviors. Even adult mice improved, which gives new hope that this therapy could one day help teenagers and young adults as well. (Link to full article: https://www.mdpi.com/1422-0067/26/17/8311)

This progress is real. The next step is preparing for human clinical trials, which Dr. Levy and his team aim to begin within the next year, pending fundraising and regulatory approval. Trial participation will be determined by regulatory authorities and an independent scientific and ethics review board. Neither Dr. Levy nor the Foundation will decide who participates.

To explain these results and what they mean for our families, we are hosting a webinar on September 16 at 9 AM ET. Dr. Levy will walk through the findings, answer questions, and share the path ahead. We encourage every family, friend, and supporter to join. (Zoom link: https://technion.zoom.us/j/91812013054)

Now we turn to our community. Clinical trials cannot happen without adequate funding. That is why this year’s Strollathon will focus entirely on raising money to support the clinical trial effort. It is our chance to rally together behind one shared goal: bringing this treatment to children, teens, and adults living with IQSEC2. (Link to fundraising page: https://givebutter.com/clinicaltrials)

Every dollar raised brings us closer. Every step taken at the Strollathon builds awareness. The more of us who participate, the greater our impact.

This is the moment to stand together. With your help, we can make history for our families.

With gratitude,
The Board of Directors
IQSEC2 Research and Advocacy Foundation

Support IQSEC2 gene replacement therapy clinical trials via Strollathon Fundraiser Sept 26-28, 2025

IQSEC2 Research & Advocacy Foundation sponsorship of gene replacement therapy research

Team Leaderboard

Team Members