Our chosen charity is Reverse Rett. It’s a charity that crew-member Ross and his wife Catherine are very much involved with as their young daughter Eliza has Rett Syndrome. The charity is dedicated to changing the lives of children and adults with this disorder. There’s a link at the bottom of the page to listen to Ross being interviewed on the Reverse Rett podcast by the charity founder Rachael Stevenson which is well worth a listen.
Rett Syndrome is a post-natal neurological disorder, which most often affects little girls, around the age of 12-18 months.
Estimated to affect 1 in 10,000 live female births, the disorder is rarely seen in males. Most people with Rett Syndrome are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common. Research has shown that people with Rett do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.
What causes Rett?
Rett Syndrome is most often caused by mutations on a gene called MECP2 on the X chromosome. The gene makes a protein which everyone needs for their brains to function properly, but people with Rett Syndrome do not have enough of this protein. In 2007, researchers at Edinburgh University proved that a cure for Rett Syndrome is possible. The scientists did this by using genetic engineering to replace the missing protein in a mouse model. These experiments showed that when the protein is replaced at the right level, the symptoms of Rett Syndrome go away. Gene therapy is one way that the protein can be replaced and human clinical trials began in 2019.
FIND OUT MORE
Founder of Reverse Rett Rachael Stevenson interviewed Ross on the Reverse Rett podcast recently. In the program he talks about what life is like for Eliza and the rest of his family living with Rett Syndrome day to day, as well as answering questions about the challenge.