Ali’s Story

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This brief story is about my 2-1/2 year-old-daughter, Ali. Ali has a beautiful smile and so many things make her laugh. She really loves Peppa Pig. That's her favorite show. She likes watching the baby channel with me. I like to sing the songs to her. She likes when I hold her and we dance, that really makes her smile. Ali has this cute little wiggle that she does while she's sitting down and it makes me laugh. Almost everything she does makes us smile. She has a lot of little moments that just make you want to smile.

A few weeks before her second birthday, Ali was diagnosed with Rett Syndrome. When we first got the diagnosis, we were beyond emotional, and had many questions. For the first week all I could think about was the worst case scenario. Everyone wants the best for their children, and we just felt so helpless. She has done so much already that we never thought she would do. Every little Angel is different.

But we have great hope. There is a very good reason to be confident that research can change Ali's life and the lives of so many other girls and women with Rett. The research needs our support to continue advancing towards treatments and, ultimately, a cure. We are doing this campaign to ask you to help us support the research that will give Ali and 350,000 other girls and women struggling with this severe neurological disorder a chance at the healthy lives that they so deserve. We thank you with our whole hearts.

Shannon Griffin

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 the development of treatments and cures 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.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (7)

  1. Sharla Hardin 
    3 years ago
    3 years ago
  3. Debra Griffin 
    3 years ago
    3 years ago
    3 years ago
  6. Deborah Sampson 
    3 years ago
  7. Christina Riddle 
    3 years ago

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