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.

Meet the Kellys. I met Nazira at work in Honolulu, Hawaii. When we met we were both single and became friends quickly. Nazira has always had an energy about her. She is courageous, fun, energetic, positive, just a really good person with a good heart. Eric, her husband is no less. When she met Eric I knew that she had found her person. Their love story took them on a beautiful journey. They have a daughter Zara and son Ezra. Ezra has Smith-Kingsmore Syndrome and they have become some of the strongest champions to find treatments and a cure for the disease. It has been a journey of strength, love, perseverance, resilience, compassion, fear, kindness, joy and everything in between.

August is SKS awareness. I've never done an online fundraiser before but I am absolutely proud to be a part of this one as it hits pretty close to my heart.

Please join me in this to help find treatments and a cure for this disease. Anything helps, give what you can. and we appreciate the efforts in helping Ezra and his family.

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.