Rare Disease Report

Hollywood Wants You to #ReverseRett By Wearing Your Shirt Backwards

OCTOBER 31, 2017
James Radke
A who’s who of Hollywood is contributing to raising awareness for Rett syndrome.

Among the celebrities are: the stars of Modern Family;  Sofia Vergara, Julie Bowen, Ty Burrell, Eric Stonestret, Aubrey Anderson-Emmons, Sarah Hyland, Nolan Gould, Ed O’Neill, and Jesse Tyler Ferguson; as well as Billy Eichner (American Horror Story: Cult), Nick Offerman (Parks and Recreation), Andy Samberg (Brooklyn Nine-Nine), Sarah Silverman, Jamie Lee Curtis (Halloween), Oscar Issac (Star Wars), Larry King, and Matt Lauer (The Today Show).

Many others have lent their voices to #reverserett. Participants are asked to wear their shirts backwards to start the conversation.

Rett syndrome is a rare neurological disorder that occurs almost exclusively in girls and can lead to severe physical and cognitive impairments. Patients with Rett syndrome are typically born healthy looking but begin to show symptoms between 6 and 18 months of age.

Early symptoms are often a regression of previously learned skills. As the disease progresses, purposeful hand movements and speech deteriorate and other physical and cognitive symptoms begin to appear. Symptoms vary greatly but can include growth retardation, seizures, autistic-like behaviours, feeding/swallowing difficulties, and breathing irregulaties.

Rett syndrome is a non-inherited genetic disorder involving mutations that spontaneuously occur along the MECP2 gene. The wide variety of symptoms seen in patients may be related to the place on the MECP2 gene where the mutation occurs.

Medications, physical and speech therapies, and nutritional support are used to help manage symptoms, prevent complications, and improve quality of life but it they do not stop the progression of the disease.

Many people with Rett syndrome live into adulthood, however, will commonly require constant care and supervision. 

The 2-minute video was developed by the Rett Syndrome Research Trust, a non-profit organization founded by Rett syndrome parent Monica Ceonraads. Ceonraads is devoted to finding a cure for Rett syndrome.

In March 2017, the organization announced their 3-year ,$33 million plan to find a cure. Part of that plan is to raise awareness of the research necessary, and to that end, the organization enlisted the help of Rett syndrome parents who work in the entertainment industry (e.g., Netfix executive Stephanie Bohn, television producer AJ Tesler, and Modern Family assistant director Matt Baker) to create the video.

People are encouraged to share the video and to post a selfie of themselves wear their clothes backwards. 

The #reverserett campaign officially ends December 31st, 2017.

For more information, visit https://rettgive.org/projects/reverse-rett/

All donations go directly to the Rett Syndrome Research Trust.

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