Action for Angela

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Angela may not say anything, but she speaks to us with her eyes, hugs, cries and her giggles. Anyone who knows Angie, knows her as a sweet girl who adores her family, her dogs, and her Snow White doll. Angie’s favorite activities include eating, being outside, splashing in water, and watching her favorite TV show, Team Umizoomi.

On July 18, 2017, Angie was diagnosed with Rett Syndrome at 2 ½ years old, after almost a year of appointments, evaluations, testing and interventions. The diagnosis was a shock to us, especially since we were told by more than one physician that “Angela does not have Rett Syndrome.” Even nearly 2 months later, we are still coming to grips with it all, and wish we knew what the future for Angie will hold.

Up until Angie’s diagnosis, we were mildly aware of Rett Syndrome due to the fact that Angie has a second cousin who also has Rett, but we were in no way as knowledgeable about it as we seem to be now that we are living it. Anyone to whom we’d told about Angie’s diagnosis, responded with a variation of the same sentence:  “I’ve never heard of Rett Syndrome before, but I just looked it up to learn more about it.” We realize that Rett Syndrome does not get the national recognition that other genetic disorders get, which is a part of the reason why we are starting this campaign – to raise awareness.  We also are hopeful, based on recent research findings, that a cure can be possible for Rett Syndrome. We are committed to making this our life’s work, and will fight for Angie and girls like her in any way possible.

Mark & Jill Goodfellow

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 (2)

  1. Barbara & Stewart Washburn 
    7 days ago
  2. Mark Goodfellow 
    2 weeks ago

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