RETT Founders' Story
Rett Syndrome doesn’t have to be a life sentence! Rett Eliminated Together Today (RETT) is an Arizona based 501(c)(3) nonprofit organization that is committed to funding research to make a cure accessible to all individuals with Rett Syndrome.
Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal subjects. Through extensive research a new gene therapy treatment has been identified with the potential to reverse the symptoms of Rett Syndrome and give back the lives of the 350,000 children and adults living with the disorder.
RETT is dedicated to funding the vital research necessary to find a cure for Rett Syndrome. Your contributions directly fund this grounding-breaking research.
Rett Eliminated Together Today is committed to funding research to make a cure accessible to all individuals with Rett Syndrome
A world without Rett Syndrome
1 in 10,000
RETT FOUNDERS’ STORY
Jim and Audra Small founded Rett Eliminated Together Today with one goal – to defy the odds and find a way to cure Rett Syndrome.
The statement, “Defy the Odds,” defines Jim and Audra Small. These three words reflect their determination and their passion for finding a cure for Rett Syndrome.
In 2006, their two-year-old daughter, Sophia, was initially diagnosed with Autism, and at that point Jim hung a sign in his office that read: “Defy the Odds.”
His business was struggling then, and this new family challenge, instead of defeating him, created a fire within him that burns to this day. His company went from being his life to becoming a strategic asset that would be a vehicle to fund Sophia’s rapidly growing medical expenses. This extraordinary motivation spurred a complete transformation of his company, taking the company from the red to black! Once the company was righted and highly profitable, Jim was able to focus more time and energy away from the business and join Audra in finding solutions for Sophia’s medical needs.
After months of continual therapy Sophia was not improving like most of her Autism group friends. In fact, her condition worsened. She developed what appeared to be night terrors. One neurologist suggested that they were seizures and even suggested that they subject Sophia to exploratory brain surgery. This was not an option either Jim or Audra were willing to entertain. Eager for answers they managed to secure an appointment at Stanford Lucile Packard Children’s Hospital. After two days of seeing a small army of specialists, a geneticist suggested they have Sophia re-tested for an incurable disorder called Rett Syndrome. Two weeks later Jim and Audra knew the name of their nemesis, it was, indeed, Rett Syndrome.
When they met with a neurologist who specialized in the disorder, they learned that girls with this disease are born healthy, but then start to regress. The little girls lose skills like their ability to talk, walk, feed themselves, use their hands, and more. The doctor’s conclusion was that Sophia would probably end up on a feeding tube and in a wheelchair, unable to walk on her own. When pushed for a potential solution, Jim and Audra were told that “This just happens to one out of every 10,000 girls, and Sophia is that one.”
For Jim and Audra, “Defy the Odds” now meant to find a cure for this “incurable” disease. Jim and Audra’s primary focus became medical research and a finding a groundbreaking solution for this devastating syndrome. They learned that Sophia actually had a less severe form of the disorder called Atypical Rett Syndrome. This more specific diagnosis has been a blessing as Sophia has been able to retain some of her ability to talk, she can still walk, and even feeds herself pretty well. They also learned that Rett Syndrome, unlike Autism in general, has a specific cause – a mutated gene – and that a scientist in Scotland had recently reversed its symptoms in mice. Today, a cure for this horrible disorder is in the works, and while the solution is not yet found, Jim, Audra, and Sophia along with all those affected with Rett Syndrome stand a chance to defy the odds!
Jim and Audra Small founded Rett Eliminated Together Today (R.E.T.T.) with an unwavering commitment to fund research and make a cure accessible to all girls with Rett Syndrome.
Your gift today can help change a child’s future.
Cureforrett.org is a 501(c)(3) nonprofit corporation registered as Rett Eliminated Together Today