Like many of you, we are parents. We are a young couple, Dan and Brianne, who have two wonderful boys, Aaron and Conor. Twins, in fact!! Aaron and Conor are our only children. Ohtahara syndrome was not even imaginable to us, now it is our reality. Aaron was diagnosed at Children's Hospital, in Nebraska, around 3 weeks old. We have since been through many changes as individuals and as a family. We love our children very much and we have a sincere desire to help other families, even if all we can give is support and understanding. We have started this organization in the hopes that we will be able to help other families with children who have been diagnosed with Ohtahara Syndrome and give them the love and support we have found through God, our family, our friends, and even through the kindness of strangers. Thank you for your support and interest in this website.
Research into Ohtahara Syndrome is a top objective for our organization. When we began this foundation, we were unaware of any current research into Ohtahara Syndrome or its associated genes. Now, today, we have helped fund two research projects and continue our search for further research avenues into Ohtahara Syndrome.
For key information on this webpage:
Meet Our Board
Brianne is our President and co-founder of Aaron's Ohtahara. She is passionate about helping these children and their families. After Aaron was diagnosed with Ohtahara Syndrome, all the searching Brianne did gave little information, not to mention any hope. She has hope that one day these children will see a quality of life deserving of any child. "We Are Not Without Hope!" was coined by her as a reminder to her of her dream of seeing these children healthy and seizure free. Brianne is currently a business student, loves traveling, being with friends, cooking, playing games, reading, singing, and much more! She has two children, Aaron and Conor- her pride and joys.
Dan is our Vice President and co-founder of Aaron's Ohtahara. He is webmaster and creator of this site, so Thank You Dan!! After Aaron was diagnosed, Dan began the search for information to help Aaron. He also saw the need for a not-for-profit organization and Aaron's Ohtahara began! Aaron and Conor are also his pride and joys! Being a father to these two blessings is the best thing to happen to him, he loves them so much!
Desiree is our Secretary and also co-founder of Aaron's Ohtahara. Together, Aaron's Ohtahara was created and now offering hope to many families! Her support and compassion for these families is evident in the love and support she gives to Dan and Brianne, not to mention her nephews- Aaron and Conor! Desiree is a wonderful mother to three beautiful children and understands that every mother wants their child to be healthy, happy, and loved- despite the diagnosis.
Medical Advisory Board