Rett Syndrome Awareness Month
In celebration of Rett Syndrome Awareness Month, I’m excited to let you know that Acadia announced today a launch of a new awareness initiative called Rett Revealed. The initiative is part of a collaboration with Emily Shifflet, a 27-year-old artist living with Rett, to recognize and celebrate the individual experiences present within the Rett community. Whether living with Rett, caring for a loved one, advocating on behalf of the greater community or working to address the unmet needs of those impacted, every journey is made up of its own unique moments. Rett Revealed will engage the community to share these moments and create a platform to showcase the array of Rett experiences as a collaborative piece created by the Rett community.
We invite you to be part of this awareness initiative!
- Visit RettRevealed.com
- Upload a photo of any moment or favorite photo throughout October
- Follow along on social media as the photos come together to reveal a mosaic based on a piece of Emily’s artwork
To participate in Rett Revealed, visit RettRevealed.com. To learn more about Emily’s remarkable life as a young artist, please visit her website, www.eyegazedesignsbyemily.com.
In Jan. 2007 Gov. Jon Corzine joined us at the Natural History Clinic in New Brunswick to sign the Rett Syndrome Awareness bill, declaring the third Tuesday of each October as Rett Syndrome Awareness Day in NJ. This it the month to contact your local media and ask them to do a story about Rett. Talk to your school, co-worker, and anyone you can to help spread awareness this month.
On Monday, October 27, 2008, Robin Turner—our BEST Rett Syndrome Advocate—made it possible for us to be on the floor of the NJ State Assembly in Trenton for a formal resolution for Rett Syndrome Awareness! We had 10 of our girls on the floor, in front of the full Assembly for a reading of the formal resolution declaring Rett Syndrome Awareness Day in NJ.