BILnation for a Cure

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BIL (Blake Imogene Luna) was born on March 8, 2016, exactly on her due date. She was a beautiful, fat and happy baby. Her development was mostly normal at first although she didn't crawl on time. We had no concerns. Over time, it became apparent that BIL was slowly losing her words and skills. At two years old, she was diagnosed with Autism. Right after her 3rd birthday we received her genetic testing results, positive for Rett Syndrome.

While this news was and still is devastating, we are ready to take action. BIL works tirelessly to participate in her life in a body that doesn't cooperate, and we will work tirelessly for her. She brings us so much joy and to everyone who knows her. BIL loves to be active. Swimming, swinging, roughhousing and running are her favorite things to do. She LOVES food and her favorite movie is Moana. Most of all, she loves her family, especially her little sis, dog, and cat.

A heartfelt thank you for your support as we fight to Reverse Rett.

Carmen & Adam Luna

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.

Supporters (7)

    5 days ago
  2. Richard Luna 
    2 weeks ago
  3. Carrie Koh 
    2 weeks ago
  4. betsy crist 
    2 weeks ago
  5. Mary Luna 
    2 weeks ago
  6. Nanette Wilson 
    2 weeks ago
  7. Amanda Holtzclaw 
    2 weeks ago

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