RETT Founders' Story

Our Mission

Rett Eliminated Together Today is committed to funding research to make a cure accessible to all individuals with Rett Syndrome

Our Vision

A world without Rett Syndrome

1 in 10,000

girls are
affected with the disorder

Every 90

minutes a girl is
born with Rett Syndrome

350,000

girls and women
live with Rett Syndrome

Rett History

1966

First Article on Rett Syndrome Published
Dr. Andreas Rett, an Austrian physician, reported his findings in a German medical journal on a new syndrome identified in 22 patients.

1983

Rett Syndrome Gains Exposure
Dr. Bengt Hagberg, a pediatric neurologist from Sweden, further describes the disorder Andreas Rett identified in 1966 in the prominent medical journal, Annals of Neurology. DR. Hagberg names the disorder after Andreas Rett.

1992

MECP2 Protein Discovered
Sir Adrian Bird, a British geneticist, discovers the MECP2 protein while searching for proteins that bind the methylated DNA.

1999

Cause of Rett Syndrome Discovered
Dr. Huda Zoghbi, a Lebanese-born American geneticist, discovers that mutations in MECP2 protein cause Rett Syndrome.

2007

Rett Syndrome is Reversible
Sir Adrian Bird publishes in the journal of Science that Rett Syndrome like symptoms in mice are dramatically reversible, even in adult mice, once normal levels of the MECP2 protein are restored.

2009

Rett Eliminated Together Today (RETT) is Founded
James and Audra Small founded RETT on behalf of their daughter, Sophia. The Smalls have one goal, to fund the cutting-edge research necessary to make a cure accessible to all individuals with Rett Syndrome.

2015

MECP2 Duplication Reversible
Dr. Huda Zoghbi successfully reverses MECP2 Duplication Syndrome in mouse model.

2017

Biotech Firm Joins the Fight Against Rett Syndrome
AveXis, a clinical stage gene therapy company, advances a gene therapy program to find a cure for Rett Syndrome. The AveXis trial was initiated by the Rett Syndrome Research Trust.

2018

Novartis Purchases AveXis
One of the world’s largest pharmaceutical companies, Novartis, acquires AveXis and will continue the gene therapy program and begin clinical trials in 2019.
Raised over $150k

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.

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DIAGOSED

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