Help me make a difference by supporting SKS research!

Currently SKS patients and their families face overwhelming day to day challenges as the overactive MTOR gene wreaks havoc on the body, including disrupting sleep and causing seizures. Imagine living with an unpredictable colicky newborn for years. Or feeling jetlagged every day. This is what life is like for SKS patients and their caregivers. The seizures and lack of sleep have negative impacts on cognition, health, and overall quality of life for people living with SKS.

Smith-Kingsmore Syndrome Foundation is working to change all of this.

This fundraiser is for Ezra Kelly--my nephew, although not by blood. My best friend has an older sister, Nazira, and she's the mother of two beautiful children: Zara and Ezra. Ezra has a super rare variation of Smith Kingsmore Syndrome (SKS) called Mosaic SKS. When he was first born, his parents noticed swirl-like pigmentations all over his body and at only five weeks old his head started growing off the charts. Then, when he was only six months old he had his first seizure and then they started occurring more and more frequently. It took Ezra nearly 3 years to get diagnosed with SKS and that's because there is so little known about this disease and how rare it is; he was one of only five people in the world with that variant at the time that the Undiagnosed Disease Network (UDN) finally correctly diagnosed him. Ezra is now 6 years old and has been in and out of hospitals, clinics, and surgeries more times than most people will ever go through in their lifetime and more. He is non-verbal, lacks the gross and fine motor skills of other kids his age, and will need one on one care for the rest of his life. Eric, Nazira and Zara continuously fight for Ezra and are a true inspiration to me even though I have never actually met Eric, Zara or Ezra. They are huge advocates for SKS awareness, the SKS Foundation and other rare diseases and their causes—my goal is to raise money through this campaign so that maybe one day the Kelly family won’t have to. Let's knock this target out of the water!

Your contribution today will help the Smith-Kingsmore Syndrome Foundation drive science further towards treatments and a cure. I’m fundraising for the Sunniest Day of Hope Campaign so that SKSF can assist each patient and their family with sleep, seizures and many other debilitating life factors by supporting research that will lead to targeted treatments.

Your donation to the Smith-Kingsmore Syndrome Foundation is fully tax deductible and not only brings help toward a disease but provides overall support to this worldwide community.