Many ways to show support for Rett Syndrome Awareness Month
Resources available, fundraisers planned to help raise disease awareness
During Rett Syndrome Awareness Month this October, the International Rett Syndrome Foundation (IRSF) invites the community to get involved and help raise awareness and funds for disease research and patient support.
The foundation looks to expand on its $58-million investment in Rett research and support to date. It provides resources including a Rett syndrome awareness toolkit with a poster and a fact sheet, as well as an educational coloring book about the rare neurological disorder. It also offers a way to make donations and to fundraise to honor a child or loved one with Rett.
Rett syndrome affects the way the brain develops and usually occurs in children, primarily girls, from 6 to 18 months old, resulting in developmental delays or the loss of abilities already achieved. Most patients will eventually lose their ability to walk and communicate. Â
Strollathons, golf, fishing, and Purple Out for Rett
Rett families can come together to raise critical funds at the IRSF’s signature Strollathons, occurring across the country throughout the month. Events take place in Maryland and New Jersey on Oct. 5, Minnesota and Pennsylvania the day after, Idaho and Missouri on Oct. 19, California on Oct. 26, and Texas on Oct. 27. Â Start times are available at online registration for each event.
Those interested in golf can attend tournaments in Raleigh, North Carolina on Oct. 3, and in Lenexa, Kansas on Oct. 14. If fishing is an interest, the Warrior William Fishing Tournament offers an all-day affair in Imperial, Missouri on Oct. 11.
Another IRSF signature event, Purple Out for Rett, is the weekend of Oct. 18-20. The foundation encourages the community to “spread Rett syndrome awareness from social media to neighborhoods and from cities and landmarks to schools and workplaces by participating in the purple out.” Participants are invited to share their photos with the community.
For adults, the Rhinegeist Beer for Humans Pint Night is happening on Oct. 16 at the Rhinegeist Brewery in Cincinnati. Participants can raise a pint and vote for their nonprofit of choice. The event is free.
Angel cards and Blue Sky Day
The IRSF is also offering personalized Angel awareness cards to help children and families introduce the disorder to people around them. Families can create personal story pages, and the IRSF will add a link to the Angel cards to boost exposure.
The Rett Syndrome Angels (RSA), formally the Rett Syndrome Association of Massachusetts, is holding its 14th annual Blue Sky Day event on Oct. 19.  It is a “special day to honor our children and a great opportunity to get together with families, Rett researchers, members of Boston Children’s Hospital Rett Program, and our Acadia sponsors,” the organization states on the registration form for the event. There will be clowns and other surprises in store for the children, and lunch is provided.
The RSA encourages the community to donate, to volunteer in-person or online, and to like and share its Facebook content with friends and family.
Registry recruitment and RettEd Live WebinarÂ
This month, the Rett Syndrome Research Trust (RSRT) looks to increase knowledge and understanding about the disease among the biopharma community.
“Our goal is to drive recruitment for our Rett Syndrome Global Registry and our digital natural history study with Citizen Health. The more families that join the more valuable the patient data sets become and the more knowledgeable industry will be about our patients,” Monica Coenraads, CEO at the RSRT, wrote Rett Syndrome News in an email.
Patients and family members are encouraged to join the RSRT and learn more about holding fundraising events and also how to start a RettGive campaign.
A RettED webinar, titled “Epilepsy Treatments in Rett syndrome,” will be presented on Oct. 24, 1-2 p.m. EST by Robin Ryther, MD, PhD, director of Rett Spectrum Clinic and professor at Washington University in St. Louis. Medications, special diets, and surgical options for the treatment of epilepsy will be discussed.
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