Freja Aranyos's Fundraiser
Help us make a difference by supporting SKS research!
Join me and help make a difference, please donate.
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.
Freja was born in 2017 before the diagnosis of SKS even existed. While her seizures have been under control with her new meds since 2021, she faces several physical, mental, and behavioral challenges every single day. From the time she was 9 months old, she has been in various therapies, early intervention services, and medical appointments. She is our joy, and we work hard every day to try to set her up for success, independence, and peace. It's our lifelong journey, and we're incredibly grateful to have a community advancing genetic research and understanding of this incredibly rare syndrome.
Your contribution today will help the Smith-Kingsmore Syndrome Foundation drive science further toward treatments. 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 and supports.
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.