Satb2 Gene Foundation Inc

SATB2 Associated Syndrome diagnosis came in June 2023, and Kendra J has continued to thrive, grow, learn, laugh, and play ever since! Why are we fundraising for the SATB2 Gene Foundation? The SATB2 Gene Foundation has given us something irreplaceable, priceless, and essential - a community of others that live with SATB2, our people that just get it . From diagnosis day, the foundation has provided resources, research data, research participation opportunities, advice on where to go / what to do next, a safe place for connecting with others and sharing struggles and celebrations, and so much more! Every donation supports the foundation in continuing with their mission. What does SATB2 look like for Kendra specifically... Kendra J has limited expressive language. This means that Kendra's verbal vocabulary isn't as large as her peers and her annunciation is a work in progress. While talking can be a struggle for her, there are many words and phrases she has mastered. She also prefers spoken language over using ASL (American Sign Language) or her AAC (Augmentative Assistive Communication - iPad with speaking app). Listening and understanding Kendra requires full attention - eyesight for noticing any gestures, hearing with little other auditory distractions to hear her clearly, thinking about the context of the moments and days before and after right now, patience during miscommunications and frustrations, predicting what she might be saying, and modeling spoken language back to Kendra. Kendra has hypotonia - low muscle tone. This means she is physically weaker than her peers. Kendra does not let this limit her physical effort or activities. Kendra wears orthotics to support her ankles, foot arch, and limit toe walking. Kendra has participated in a large variety of activities: dance class, ice skating lessons, soccer camps, golf lessons, gymnastics, swim lessons, and of course physical therapy lessons. She loves being active and recently started to really enjoy riding her tricycle and running just for the sake of running. Kendra has a developmental delay - meaning she's a bit behind her peers in overall development. However, Kendra continues to amaze us every day with how much she strives to achieve like everyone she is around. Kendra is an observer and after watching her peers do something, she's all in and ready to face that challenge! Kendra has recently had 2 known seizures. Any genetic disorder puts an individual at a higher risks for seizures. We were made aware of the possibilities of seizures from her diagnosis day in 2023, but now it's become a reality. Because this is newer for us - we don't know much else. We carry what's called "rescue medications" with us now and hopefully we never need them. Kendra will participate in an overnight EEG to see if we can catch any seizure type activity to help us understand seizures in Kendra specifically. Any donation to the SATB2 Gene Foundation is very much appreciated! All our love, The Comstocks

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!