Get Involved
Here are three simple ways that we could use your support...
1. Speak Up
Rett Syndrome is an extremely rare genetic brain disorder that only occurs in less that 1,000 girls in the world each year. Chances are, most people do not know anything about it. By doing something as simple as sharing Evelyn's story with other people through social media and other platforms, or wearing a T-shirt, you are helping to give a voice to not only her, but also the many others who are living with Rett. The more people that know about Rett, the better!
2. Love Well
Whether we find a cure one day or not, we know that Evelyn will have a beautiful life regardless. We simply ask that if you meet a family impacted by Rett syndrome that you offer an open heart and a helping hand. Love and understanding goes a long way and for some, that is what is needed most. This life is so complex, with so many layers of grief intertwined with the purest love. Sit with them, talk to them even if they don’t respond in a way that you understand, buy their caregiver coffee, hold the door open, or just smile.
3. Give
Living with Rett Syndrome comes at a high cost. Everything from tests, screenings, therapies, medications, adaptive equipment and medical technology adds up to a great financial burden on families living with Rett Syndrome. By giving to Evelyn's Voice, you are helping Evelyn have the best life possible by giving her access to everything she needs.