Did your child recently receive a Rett syndrome diagnosis? You are not alone.
Rettsyndrome.org meets you at diagnosis and helps you through every facet of this unexpected journey. Our mission is to accelerate research toward treatment and a cure, but we are also committed to empowering families. It’s essential that families are equipped with information, resources and connections to help them thrive while we pursue a cure.
We Understand
RSO Family & Community Engagement Manager, and mom to Macy (RTT), Samantha Brant shares, “Not only do you gain knowledge of resources and research, but you gain a friend in the process.” Rettsyndrome.org was founded by parents of children with Rett syndrome. Many on staff at RSO are parents of children with Rett syndrome, so we understand the emotions that follow a diagnosis. Samantha continues, “The process of grieving can make you feel like your heart is literally breaking. When RSO provides a listening ear and resources it makes the pain a little more bearable.”
“Getting Maylee’s diagnosis was one of the scariest and darkest times of our lives. But the outpouring of love and support we received from Rettsyndrome.org helped us to pick ourselves up and help to carry Maylee through this journey and knowing all the support we had helped us to be the best caregivers we could possibly be for our sweet girl!” – Mallorie S.
A Powerful Community
The Rett community is large network of families and advocates who are ready to help. Our Family Empowerment State Representatives can point you to resources and families in your area to help you take the first step towards organizing doctors, therapists and equipment. Our community is ready to offer emotional support. “It’s like having a friend that understands what you are going through at this very moment,” shares Samantha.
Getting Started
The best way to get connected is to register as a newly diagnosed family. Once you do, our team will reach out to find how we can best support your family. We will also send you a New Parent Packet that includes the 100 Days Pathway which provides direction for your next steps. We also include The Rett Syndrome Handbook – 500 pages of insights and answers. The New Parent Packet also includes the recently published Rett Syndrome Primary Care Guidelines to share with your medical team, as well as the list of Rett syndrome clinics and Natural History Study sites.
“I truly appreciate the new parent packet we received and all the helpful information that came with it. Thank you for all the information and support you have provided. It has definitely made things easier to digest as trying to navigate it all! As a parent, this wasn’t a journey I ever thought I would be navigating…Thank you!” – Caitlyn B., mom to Lexi.
Overpower Rett
There is life beyond a Rett syndrome diagnosis. It might not seem like it today, but you will stand again. With determination, hope and the support of others, you may even want to get involved in our effort to #overpowerrett. Together we’re stronger and can further research advancements and offer strength to the next family in need. Rettsyndrome.org has educational, advocacy, fundraising and family events around the country where you will meet other families, learn more about Rett syndrome and raise awareness of this rare disease.
Reach Out
Take the first step. Fill out the Newly Diagnosed form and take advantage of the relationships, resources and information available to families affected by Rett syndrome. Even if it’s been years since your child was diagnosed and you’ve never reached out to Rettsyndrome.org, we’d love to hear your story. Please register or reach out to our Family & Community Engagement Manager, Samantha Brant directly at [email protected] or 913-221-8157.