Supporters urged to ‘go one step further’ this Rett awareness month
Goal is focusing on the person, not the disease, helping others 'Know Rett'
Written by |
October is Rett Syndrome Awareness Month, and advocates are gathering for in-person events and making their voices heard online to raise awareness about Rett syndrome, a rare genetic condition that causes developmental abnormalities.
As in years past, key goals of Rett Syndrome Awareness Month 2026 include fundraising to fuel research, raising visibility, and fighting stigma. This year, however, advocates are pushing the community to spotlight individuals with Rett — their unique personalities, likes, and dislikes — rather than focusing on the disease itself.
“Every October, the Rett community comes together to raise awareness, build understanding, and help more people know Rett syndrome. This year, we’re asking the world to go one step further,” the International Rett Syndrome Foundation (IRSF) stated on its website, with this mission: “Know Rett. See the person. Know the story.”
“Awareness starts with understanding Rett syndrome, but connection comes from knowing the people behind the diagnosis: their personalities, interests, relationships, accomplishments, challenges, and stories,” the IRSF webpage states. “Throughout October, join IRSF in sharing the facts, celebrating the people who make up our community, and helping more people ‘Know Rett.'”
To help advocates spread the word, the IRSF offers a range of online resources, such as graphics and a Rett-themed profile picture frame for social media. Other Rett advocacy groups, such as Girl Power 2 Cure, which helps run Rett University, an “e-learning platform designed for parents, educators and therapists,” also offer online advocacy resources.
In Canada, a coalition of advocacy groups is marking October with a campaign called pRETTy Awesome. The groups are offering pins with the campaign’s title or other adjectives, such as pRETTy brave, pRETTy sassy, and pRETTy amazing. The goal is to highlight the unique attributes that make each person with Rett wonderful, while also serving as a starting point for discussions that can raise awareness, its supporters say.
Events marking Rett Syndrome Awareness Month will span US
In the U.S., over the course of October, advocacy groups will be hosting a range of in-person events to raise funds and bring the community together. This Saturday, the Rocky Mountain Rett Association will be hosting its annual RMRA Family Barbecue & Roll in Littleton, Colorado, and the IRSF and Ella Foard Foundation will be co-hosting Ella’s Evening of Hope, a gala fundraiser in Charlotte, North Carolina.
Also this Saturday, the IRSF is hosting Strollathon fundraisers in Lincroft, New Jersey; Kissimmee, Florida; and St. Louis, Missouri. Similar fundraisers are scheduled later in the month in Silver Spring, Maryland; Savage, Minnesota; Whittier, California; and in Houston and Carrollton, Texas.
Other Rett fundraising events taking place later this month include a bass fishing tournament in Camdenton, Missouri, a golf event in Lenexa, Kansas, and a fall harvest festival in Mt. Angel, Oregon.
Leave a comment
Fill in the required fields to post. Your email address will not be published.