Olivia’s 13th Birthday Gift Giving for Ava

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Olivia made one request when planning her 13th birthday:

I have everything I need and want, but others don’t, so NO GIFTS. Can we raise money for others? If I had one wish, a cure for my cousin Ava would be perfect. So let’s start there.

Ava, or “Avalicous,” has the brightest blue eyes that sparkle when she is happy, the prettiest smile that lights up a room, and one of the most contagious laughs that make you laugh with her. To know her is to love her. But Ava has Rett Syndrome, which is a very difficult disorder. What’s exciting though is that scientific research is making very good progress. With more support, research could lead to a cure for Ava and so many others with Rett Syndrome.


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 (16)

  1. St. Richards Primary School 
    5 months ago
    $2,591
  2. Victoria Wilson 
    7 months ago
    $50
  3. Rachel Napier 
    8 months ago
    $20
  4. Zachary Beard 
    8 months ago
    $30
  5. Anonymous 
    8 months ago
    $20
  6. Amber Usenich 
    8 months ago
    $20
  7. riley trewin 
    8 months ago
    $15
  8. Campbell Manser 
    8 months ago
    $30
  9. shannon mooney 
    8 months ago
    $100
  10. Katherine Herring 
    8 months ago
    $30
  11. Olivia Mackowiak  
    8 months ago
    $30
  12. Melissa Kerr 
    9 months ago
    $15
  13. Hayley Mitchell 
    9 months ago
    $100
  14. Tracy Germain 
    9 months ago
    $100
  15. Michelle Doran 
    9 months ago
    $30
  16. Anonymous 
    9 months ago
    $100

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