Be part of the breakthrough!

Smith-Kingsmore Syndrome (SKS) is a rare genetic condition that affects brain development and leads to challenges like seizures, developmental delays, and sleep disruption. Right now, there are no targeted treatments, but science is making progress.

Our 8-year old son, Ezra, has mosaic Smith-Kingsmore Syndrome. While SKS is considered an ultra-rare disorder, mosaic SKS is even more rare and more complex. It often times falls on the more severe spectrum of SKS. Diagnosis can take longer as conventional genetic testing can come up inconclusive. In Ezra’s case, it took three rounds of genetic testing before he had a diagnosis. Ezra was just a week shy of his third birthday when we got the news that he has mosaic SKS.

One of Ezra’s biggest challenges that he faces are seizures. He has been battling this since he was six months old. He is on several anti-epileptic medications, and has had a vagus nerve stimulator (VNS) implanted when he was 2-years old, and still his seizures are not controlled. He has had numerous ER visits, EEGs, and hospitalizations due to seizures.

Please consider donating to our cause. We need more research to learn how to help Ezra, and other SKS individuals who are struggling with seizures.

Thanks to support from the SKS community, researchers have developed fruit flies with SKS that can be used to test existing medicines. Now we’re raising funds to put those flies to work and search for treatments that could improve life for individuals and families living with SKS.

Your donation helps fuel the next phase of research, and brings hope to a community that truly needs it.

Thank you for your support.