Supporters Urged to Go ‘All In’ This Month to Raise Rett Awareness

This October, IRSF, advocates hope to educate public on rare disease

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by Mary Chapman |

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From starting a Facebook fundraiser to handing out personalized information cards about Rett syndrome, supporters worldwide are marking Rett Syndrome Awareness Month, which occurs each October.

Now, the International Rett Syndrome Foundation (IRSF) is offering up a host of ways people can “Go All In This October” to heighten awareness of the neurodevelopmental disorder.

The goal is to educate — and improve the awareness of — the general public, researchers, lawmakers, and other stakeholders globally, and to raise funds to fight the disease. IRSF resources are available in dozens of languages.

The disease almost exclusively affect affect girls — it is thought to occur in about 1 of every 10,000 female births — although in very rare cases, males also are diagnosed.

“Rett syndrome is a rare disease and though we’ve made strides many still don’t know it exists,” the organization states on its awareness month webpage. “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.”

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To help patients and their families share their stories about life with Rett, the IRSF is providing caregivers and supporters with a Rett Syndrome Awareness Digital Toolkit. It offers opportunities for everyone to get involved, from hosting fundraising events or creating a personal fundraising pages to volunteering and advocating for the Rett community.

The foundation also is providing awareness month resources such as a downloadable Rett handout, brochure, and fact sheet, plus posters and a “Just Like Me” educational coloring book that can be used to introduce Rett to patients’ siblings and classmates.

October is Rett Syndrome Awareness Month

Additionally, the IRSF is offering Personalized Angel Awareness Cards that can help children and adults with Rett syndrome introduce the disorder to people around them. Each card includes a photo of the person living with Rett as well as a couple of things about them, and the organization’s name.

There are also downloadable graphics that awareness month participants can use throughout October on their social media platforms, as well as an advocacy guide to help with lobbying lawmakers for funding and policy support.

Supporters also are encouraged to register this month for the 3rd Annual Raise a Glass for Rett Gala IRSF fundraiser, which will be live-streamed from New York City on Nov. 12. The event also may be viewed virtually or via in-person viewing parties in Houston, Texas, San Diego, California, New York, New York, and Grand Rapids, Michigan. Tickets are $50.

Awareness month participants are also invited to connect with local Rett families at in-person IRSF Strollathons, which are nationwide community fundraisers that help support patients and advance research.

“As we relentlessly pursue a cure, we come alongside families with support, wherever they are on the journey. Each of them faces constant challenges, heartache, and disappointments. They all need compassionate and practical support, effective treatments, and a cure,” the organization stated, adding, “You can meet those needs by helping us take incredible strides forward in much-needed research — this October and beyond.”

The IRSF, which is a research and family empowerment organization, has invested more than $54 million to date in scientific investigations.

There are other awareness month efforts across the globe. In Canada, for example, the Ontario Rett Syndrome Association is marking the month by working with local governments to proclaim October as Rett Syndrome Awareness Month, having landmarks and public buildings lit in purple — the color that represents Rett — distributing “Rett Awareness” lawn signs, and encouraging registration for its signature fundraiser Run4Rett.