How to support Rett community during awareness month in October

IRSF encouraging people to go 'All In' to show support for patients, families

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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A hand holds a ribbon to raise disease awareness.

October is Rett Syndrome Awareness Month, and the International Rett Syndrome Foundation (IRSF) is encouraging people to go “All In” to support patients and boost critical research.

“This October during Rett Syndrome Awareness Month, there are so many ways you can join IRSF to help increase awareness of Rett syndrome around the globe. More awareness means more support for families and more funding for critical research,” the organization states on its webpage.

The foundation provides a Rett syndrome awareness toolkit with a brochure, a handout, a fact sheet, posters, and a ‘Just like me’ educational coloring book to help patients and families share their stories. It also offers a way to make donations and create fundraising pages to honor a child or loved one with Rett.

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Angel awareness cards, social media tools, virtual gala, and more

The IRSF is also offering personalized Angel awareness cards to help children and families introduce the disorder to people around them. Each card includes a photo of the person with Rett and some personal information.

Downloadable social media graphics and profile picture tools are available for participants to use throughout October on their social media platforms, as well as letter templates to lawmakers asking for funding and policy support.

Those interested can participate in the 4th Annual Raise a Glass for Rett Gala, on Oct. 28. The event seeks to bring the Rett community together, sharing personal stories and updates on the latest research. It is expected to be streamed by thousands across the globe, from viewing parties in Cincinnati, Houston, and Grand Rapids, and from home. Tickets for viewing parties are free for Rett patients. Those for the virtual gala are $65.

Awareness month participants can also interact with local Rett families at in-person Strollathons, local community fundraisers that help support patients and advance research. These events have raised more than $15 million since their 2004 launch to advance IRSF’s mission.

The organization also has T-shirts, temporary tattoos, and more, available on their online store, with proceeds benefiting the IRSF.

More awareness means more support for families and more funding for critical research.

IRSF has invested more than $58 million in research

Over 40 years, the IRSF has invested more than $58 million in research, while supporting thousands of patients and families around the world across all disease stages.

“IRSF is relentlessly pursuing a cure for Rett syndrome in the future while also providing unwavering support for families fighting Rett right now. In ways big and small, you can help us fund this critical mission,” the organization stated.

IRSF seeks to raise $29 million by 2024 to advance research that may help develop treatments and ultimately a cure for the disease, and to expand care for patients.

Elsewhere, the Ontario Rett Syndrome Association provides worksheets, graphics, lawn signs, and an awareness kit to help spread the word about Rett. Each year, the association asks local landmarks to show support for Rett by lighting up purple. Everyone is encouraged to light their homes purple as well.

“We hope all members, families, caregivers, and friends will help spread the word to make a difference in the lives of individuals living with Rett,” the Canadian association stated on its webpage.

Rett syndrome is a genetic disease that mainly affects girls — about 1 of every 10,000 female births — although there are very rare cases of male patients with the disease.