Satb2 Gene Foundation Inc

Our daughter, Nora, has SATB2-Associated Syndrome, a rare genetic condition that affects communication, learning, and development. While SATB2 has brought challenges our family never expected, it has also introduced us to an incredible community of families, researchers, therapists, and advocates who have reminded us that no one should face this journey alone. If you’ve spent any time with Nora, you’ve probably noticed her smile. You may have also noticed that even though she doesn’t communicate with words, she has an amazing way of letting people know they’re loved. She is fiercely loyal to her sisters, protective of her friends, and has a way of bringing joy to the people around her. Nora has changed the way our family sees the world. She has taught us that every person has immeasurable worth, every milestone deserves celebrating, and love doesn’t depend on spoken words. Each August, we gather for ice cream to celebrate Nora—not because of her diagnosis, but because of the remarkable little girl she is. This year, we’d like our celebration to bless other families as well. Rather than collecting donations ourselves, every contribution made through this page goes directly to the SATB2 Gene Foundation. The Foundation supports research, connects families around the world, provides educational resources, and helps improve the lives of individuals living with SATB2-Associated Syndrome. The Foundation has been an incredible source of hope and information for our own family, and we’re grateful for everything it does. We don’t know what tomorrow holds for Nora. But we do know that every child deserves the opportunity to reach their fullest potential, and every family deserves hope. Whether you join us for ice cream, make a donation, or simply share this fundraiser, you’re helping create hope for families who are navigating this rare diagnosis today—and for those who will receive it tomorrow. Thank you kindly for joining us!

Our family continues to raise awareness and fundraise for SATB2 Associated Syndrome. We do so in honor of our beautiful boy Luke and all the wonderful individuals impacted by SAS. SATB2 associated syndrome is a rare genetic condition that affects speech, development, and many aspects of daily life. For families like ours, the challenges are real every single day—but so is the hope that research can change the future. Things that come easily to most children, require a lot more time, effort, exposure, and professional guidance. Although he faces many challenges throughout his day, Luke continues to be an inspiration to US. I proudly say, he is the hardest working guy in the room. At just 5 years old! Teaching his baby sister sign language, attending school year round, therapy sessions - all while having the most amazing personality. He has given our life such purpose and continues to amaze us every day! We have been incredibly blessed with the amount of love and support we have received this far. Every donation is truly appreciated. Your contribution helps move the science forward, provides family support, and much more. SATB2 awareness day is just a few days away. Please us reach our goal. And don’t forget to send us a picture in your “team lukey“ gear if you made a purchase! Thank you again from the bottom of our hearts!