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October 1, 2022Perspective
Sharing Unique Moments During Rett Syndrome Awareness Month
During Rett Syndrome Awareness Month in October, visitRettRevealed.com, a new awareness campaign that highlights the lives of Rett patients through a photo mosaic designed by Emily Shifflet, a 27-year-old eye-gaze artist living with Rett syndrome.
Just as every person impacted by Rett syndrome is different, so too is their experience. Whether living with Rett, caring for a loved one, or advocating on behalf of the greater community, every journey is made up of its own unique moments. Rett syndromeis a rare genetic neurodevelopmental disorder that affects the way the brain develops, causing a progressive loss of motor skills and speech. Rett is not widely known, but you can help raise awareness about it this October during Rett Syndrome Awareness Month.
We invite you to visitRettRevealed.comto upload a photo of your unique moment or experience with Rett. It may be a photo that brings you joy, a family adventure, or a photo of you raising awareness. Follow along throughout the month as the submitted photos come together to reveal a unique mosaic based on art created by Emily Shifflet, a 27-year-old artist living with Rett.
Using eye tracking and eye control software to paint her designs, Emily came to art as a young adult when digital painter software was installed on her communications device. Since then, art has played an essential part in her life, enabling her to express her creativity in spite of physical limitations. To learn more about Emily’s remarkable life as a young artist, please visit her website:EyeGazeDesignsByEmily.com.
We are excited for Emily to have this special opportunity to share her passion for art with others. Seeing her continue her love for art while also bringing awareness to the Rett community fills our hearts with joy. It is shared moments like these that are worth celebrating.
Bob and Jenny Shifflet, Emily’s parents
At Acadia, we are dedicated to fighting diseases like Rett syndrome to help brighter moments shine through for patients and their loved ones. Our strong connections in the Rett syndrome community include supporting organizations such as the International Rett Syndrome Foundation andChild Neurology Foundation, participating in community events to improve awareness and understanding of Rett syndrome, and establishing the Rett Parents Council to listen and learn directly from parents of children with Rett syndrome.
Acadia stands with the Rett community and is committed to raising awareness about Rett syndrome and advancing science to address this acute area of unmet need. Through Rett Revealed and the result of the final photo mosaic, we want to show that every person impacted by Rett syndrome is unique, and their journey is, too.
Bill Keller, Vice President, Patient Advocacy and Industry