A Cure for Courtney, A Cure for All

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Courtney was born on July 3, 2005 in Carrollton, Texas. Courtney is such an amazing young lady in our eyes! She has a smile that can light up any room! Courtney was diagnosed with Rett Syndrome (mutation R255X) a little after her third birthday and began to have seizures along with other regressions a little after her fifth birthday. Rett Syndrome is caused by a random mutation in a single gene and can happen to any child. Imagine the symptoms of ALS, Anxiety, Autism, Cerebral Palsy, Epilepsy and Parkinson's... all in one little girl. Rett Syndrome has taken away many things like running, talking, and feeding herself, but it has not taken away her loving spirit and infectious laughter.

Courtney is just like most thirteen year old girls. She has the teenager attitude, loves hanging out with her friends and family, school and watching movies. She also loves to go swimming, shopping, do girly things, explore the outdoors, boy bands, butterfly kisses, and loves everything about food. She is smart, sassy, brave, funny and she teaches us to have patience and live life to the fullest. The only thing that makes her different is she is trapped in a body that does not work. Above all things, she just wants to be included.

As a family we are dedicated to raising awareness and money for Rett Syndrome Research and know that if we all work together, a cure will be found! We are so close to making it happen, but we still need your help to continue the research and clinical trials taking place. Please help us to be the difference in the lives who need us most. For all of those we have lost, for those who are still fighting, and for those who do not know yet their son/daughter has Rett Syndrome.

Thank you from our family to yours

"Alone we can do so little, Together we can do so much" - Helen Keller


What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive research to a cure for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

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