Tomorrow starts Rett Syndrome Awareness Month. Needless to say, all around the world parents, researchers, doctors, aides (the lovely ones, like Curry), siblings, grandparents and loved ones are going to bombard their Facebook pages with statistics, symptoms, pictures of purple fingernails and toe nails and hair. They are going to put up purple lightbulbs, have Strollathons, have Blue Sky events, fundraisers galore. Basically, we are going to be super annoying to a large part of our communities and in the words of Maya DiMeo (mother on the amazing show “Speechless”) ….”don’t care.”
Even though we all try and raise awareness throughout the year, every October we become galvanized, determined, desperate to make people hear our plea-Help us cure our children.
And, to start the month off in a great way, Rettsyndrome.org , along with the generous support of Newron (the ones doing the Sarizotan clinical trial), has put together this marvelous video. I saw some very familiar faces and families, and it was such a surprise to see my Katie in there too. The ending had a particular impact on me because “there is hope we can reach them again” I’ve seen it during the Trofinetide trial. I KNOW it is possible, and more importantly so does Katie.
Please share this video and bring on October!