A number of events are in the works to mark Rett Syndrome Awareness Month, observed each October to heighten awareness about the rare neurodevelopmental disorder.
Patients, caregivers, and advocates may, among other activities, share stories on social media, attend virtual events, hold Facebook fundraisers, and sport temporary tattoos — all in the name of raising awareness for Rett as well as funds to fight it.
“Countless people across the country still haven’t heard of Rett syndrome, which is why October is crucial for awareness, advocacy, and education,” states Rettsyndrome.org on an event webpage. The organization is coordinating a host of Awareness Month activities.
By using the hashtag #OverPowerRett and tagging @Rettsyndrome, for example, supporters can join in 31 Days of Rett. The organization’s educational social media posts can be shared across platforms every day in October.
Participants are also encouraged to buy a Rettsyndrome.org T-shirt, take selfies wearing it, and post the photos on social media.
In an effort called Raise a Glass Against Rett, supporters are asked to join Rettsyndrome.org at 8 p.m. EST Oct. 24 for a virtual gala that will include community stories, research updates, and ways to help in the fight against Rett, according to the nonprofit. Each $50 ticket includes the choice of an etched wine or beer glass. Proceeds will go toward Rett research.
An awareness event called Light Up the Night will be held Oct. 29 and calls for landmarks and other prominent structures globally to be lit in purple, the official color of Rett syndrome. To broaden the impact, supporters are encouraged to order and install purple lightbulbs in their homes.
Awareness Month participants may also create a Facebook fundraiser to benefit research and empower Rett families with information, knowledge, and connectivity. A Rettsyndrome.org Personal Page can also be created in honor of a loved one with Rett. The pages are a way to share personal narratives as well as raise awareness and support.
Additionally, a host of community events are planned throughout the month, including town hall meetings, educational webcasts, fundraiser marathons, rides, and “Strollathons.” In addition, the organization is gathering state proclamations that officially declare October Rett Syndrome Awareness Month. Go here to help out.
For its part, the Rett Syndrome Research Trust has an Awareness Month campaign themed “Speechless. For Rett.” in recognition of a common Rett symptom — loss of speech. On Oct. 24, supporters are asked to be silent for an hour starting at 2 p.m. EST. During that time, the organization will debut a video that will include photos of families that are participating in the campaign.
As part of Speechless. For Rett., registrants are asked to take a selfie with the mask the organization provides and use it as their Facebook profile picture throughout October. They are also asked to create a Facebook fundraiser for Rett syndrome research.
“Amongst the many challenges that Rett inflicts on our children, perhaps the most difficult is loss of speech,” the Trust states on the event’s webpage. “Speechless. For Rett. recognizes and honors this struggle. … The more families that participate, the more powerful and impactful the campaign will be.”
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