Hello -
We are so happy you are here! We are a group of families that found one another through the power of social media. The need to create a website came about after our children were diagnosed with HIST1H1E. We were frustrated by the lack of information and resources available to us which left us feeling alone and helpless.
The original goal of this website was to offer support and share research to the small, but growing, community of families whose children have been diagnosed with HIST1H1E. We formed our Board of Directors in 2019, after a lengthy application process, we finally received our 501(c)(3) tax-exempt status by the United States government. The members of our Board are all parents of a child with a HIST1H1E diagnosis; all of which are volunteering their time to this cause. If you have any experience in the following areas – fundraising, graphic design, social media management, genetic research and/or legal – please reach out to us. We will need more volunteers down the road to help us grow and get the word out about our mission. For more on our Foundation’s goals, please read our Mission Statement.
If you are an extended family member, friend, therapist or medical professional of a child who has been diagnosed with HIST1H1E, thank you for taking the time to visit our site. Your interest in understanding how our children are affected is greatly appreciated! As the saying goes, 'it takes a village', and you all are our village. Please head over to our Resources tab and take a look at our Recommended Reading for our 'Village'.
If you are a newly diagnosed family, you may be feeling overwhelmed, shocked, sad, angry, confused, relieved and the list goes on; we know, we have been there. We recommend you start by reading our Common Questions page first. Keep in mind that everyone processes the diagnosis differently and collectively as a group we have felt every emotion. Some may want to dive into the research, while others may be understandably overwhelmed by all the complex medical terms. It is perfectly acceptable to give yourself a little bit of time to come out of the initial fog of diagnosis before you attempt to read through all the research. Please continue to check this website for updates as the research on HIST1H1E is constantly changing and emerging.
There are a couple of current studies being done on HIST1H1E, you can learn more about these under our Research tab. We encourage you to register your child in the HIST1H1E registry; as well as contact the below medical advisors currently researching HIST1H1E in different capacities:
Please contact us if you have any questions or if you know of information that is missing from our website. This site is run by parents and volunteers, and we can only continue to be up-to-date when we all share information.
Follow along with us and jump into our social network on Instagram, like us on Facebook and join our private Facebook page (for parents and caregivers only) to connect with other families. We are a small but mighty group; the more we can help and support each other, the stronger we all will be as families and advocates.
We believe it is important for us parents to take action in regards to the development and future of our children. Since 2018, our private Facebook group has grown from a few families to over 30 families from all over the world. We love and appreciate our medical teams and all they do but we know no one is going to care as much about understanding how HIST1H1E affects our children as we will as parents. Together we will drive the ongoing research so we can come to a better understanding of what our children are facing and how we can best help them. Though each child is impacted differently by HIST1H1E, they are all deeply loved, and they deserve to be seen as more than just a “puzzle” or “mystery.” Let’s work together to help unravel their mysteries and change the narratives surrounding our kids.
Welcome!
