Social Media Campaigns, Purple Lighting Mark Rett Syndrome Awareness Month

From social media efforts to lighting public attractions purple, efforts are underway to observe Rett Syndrome Awareness Month.

Rettsyndrome.org is helping to lead the charge, offering ways to bring greater visibility to the rare neurodevelopmental disorder, estimated to occur in 1 of every 10,000 to 23,000 female births.

“Countless people across the country still haven’t heard of Rett syndrome which is why October is crucial for awareness, advocacy and education,” the organization says on its website.

Supporters may, for example, update their Facebook photo frame and share it — using the hashtag #overpowerrett — across social media channels.

The organization also is offering “31 Days of Rett Syndrome,” in which advocates can download and share a new post about the disease each day this month to help raise awareness. For example, one factoid notes that “The hallmark sign of Rett Syndrome is repetitive hand movements,” while another says “Rett syndrome is like having cerebral palsy, epilepsy, autism, Parkinson’s, anxiety and breathing abnormalities all in one child.”

Many supporters have gotten their state and local governments to issue Awareness Month proclamations. States participating this year include Ohio, Pennsylvania, Georgia, Arkansas, Arizona, and Missouri, according to Rettsyndrome.org, which provides a guide to obtaining such issuances.

The organization also is offering T-shirts and custom awareness pins and jewelry, plus selfie-friendly temporary tattoos for social media photo sharing.

Another idea is starting a Facebook fundraiser to help Rettsyndrome.org heighten awareness. Or, supporters may create a Rettsyndrome.org Personal Page in honor of a loved one with the disease. The page may be shared with family, friends and coworkers to help fund research. So far, the effort has garnered more than $42,000.

Awareness-raising events are being held around the country. These include the 7th Annual San Antonio Strollathon on Oct. 19 in Texas, and a Raise a Glass Against Rett: Napa event on Oct. 26 in St. Helena, Calif. Monmouth University’s Program for Research and Support for Rett Syndrome will hold its 2019 Annual Conference, titled “Communication and Literacy for Individuals with Complex Communication Needs,” on Oct. 24-25 in West Long Branch, N.J. Visit this site for more activities.

“Rett syndrome has trapped thousands of children and adults in their own bodies,” the Rettsyndrome.org website says. “Without the ability to play, be a part of normal activities, or use their own voice, they need YOU to spread the word this month.”

Awareness Day is an international affair. In Canada, the Ontario Rett Syndrome Association (ORSA) is marking the month with its “Go Purple” initiative. On Oct. 29 — give or take a day — major attractions across the province will be lit purple, the color representing Rett syndrome. Homes and businesses also are encouraged to install purple lighting.

Ontario attractions going purple include the Peace Bridge in Fort Erie, Niagara Falls in Niagara Falls, the CN Tower in Toronto, and the Clock Tower in Brampton.

A downloadable ORSA fact sheet about Rett syndrome is available and may be shared with friends and coworkers.

Caused in most cases by a mutation in the MECP2 gene, Rett syndrome affects brain function and results in cognitive, emotional, sensory, and motor problem. It also leads to problems with autonomic functions such as heartbeat, breathing, and digestion.

The nonprofit Rettsyndrome.org aims to advance research to cure Rett syndrome, and empower affected families with information, knowledge, and creativity. The nonprofit organization ORSA supports patients, caregivers and researchers striving for a Rett syndrome cure.