Rett community goes purple in October for awareness month
Groups encourage supporters to use social media to spread the word
October is Rett Syndrome Awareness Month, and supporters are going purple to bring attention to the rare genetic condition.
“There’s no one right way to raise awareness,” the International Rett Syndrome Foundation (IRSF) says on its website. “Whether you’re posting on social media, sharing your story, or just starting a conversation, you’re helping others understand what Rett really means.”
Rett syndrome is a rare genetic disorder that mainly affects girls. The condition is marked by abnormalities in development, resulting in Rett symptoms such as behavioral abnormalities, repetitive hand movements, and difficulty communicating.
October is “a dedicated time to share stories, foster understanding, and rally support for continued advancements in Rett syndrome research and care,” the IRSF said. For the second year in a row, the foundation is running a Purple Out campaign, encouraging community members to wear purple the weekend of Oct. 17-19 and to decorate their online profiles in purple in an effort to raise awareness. The IRSF has a shareable flyer about the event, and highlights from last year’s Purple Out event are viewable on YouTube.
The IRSF offers tools for advocating to lawmakers and spreading the word on social media, with informational graphics and a themed profile picture frame available. The foundation is also encouraging community members to start fundraisers to raise money in support of the IRSF’s mission to fund research and support for Rett families.
Fundraising for research
Rett Syndrome Angels, an advocacy organization in New England, is also fundraising for Rett this October.
“Your donation fuels research that is already changing lives for families affected by Rett Syndrome,” the group posted on its website. “We’re living in an extraordinary moment of hope – the first-ever FDA-approved treatment became available in 2023, bringing tears of joy and relief to families who never thought they’d see this day.”
That treatment, Daybue (trofinetide), was approved in Canada last year, and in January, developer Acadia Pharmaceuticals submitted an application seeking approval in the European Union.
“This is just the beginning of what’s possible,” the group said, noting that more than 50 experimental Rett therapies are in development. “Together, we can build on this incredible momentum and bring even more light to everyone touched by Rett Syndrome.”
In addition to raising funds, Rett Syndrome Angels is encouraging community members to volunteer and engage on social media. On Oct. 5, the group is leading Purple Sky Night, when landmarks in New England will be illuminated in purple to raise Rett awareness. And on the morning of Oct. 25, Blue Sky Day at Harvard Medical School will honor people affected by Rett.
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