2nd Annual Camilla’s RSRT Fundraiser – 2019

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When our sweet angel Camilla was born, she brought so much joy and love to our family. Camilla said mama when she was 4 months of age and was able to snap her fingers at 7 months. She was able to walk and speak and had the cutest laugh that would steal everyone’s heart.

Camilla’s development took a turn after 18 months. She began her repetitive hand wringing and started to lose balance when she walked, and that’s when her pediatrician advised us to get her tested for Rett Syndrome. The diagnosis of Rett Syndrome crushed our hearts, hopes, and dreams. We watched our little girl slowly lose her ability to communicate via speech, lose basic motor functions so she could no longer play with toys like other kids, and have difficulties with chewing and breathing. There are other challenges she may face in the future such as seizures and other mobility issues, but despite all of this Camilla never ceases to amaze us every day with her strength to fight this devastating illness. She has the sweetest spirit and is such a happy and affectionate little girl.

We love every day we have with her and she continues to bring us such joy. Along with that joy we also have hope because the recent research has shown that Rett Syndrome is reversible. We used to sing a silly song to Camilla that said “C is for Camilla, no longer cookie.” Now that C is for CURE! Please join us and be a champion for Camilla (and the other girls and women) in their fight against Rett Syndrome. There is a cure out there and the money to fund the research is in the hands of those who open up their hearts and donate.

Thank you very sincerely,

Ryan, Mary and Camilla

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 (12)

  1. Milagros Medina 
    16 hours ago
  2. Susan Ames 
    1 day ago
  3. Noemi Stevens 
    2 days ago
  4. Helen Shpaner 
    3 days ago
  5. ray lin 
    3 weeks ago
  6. zhaohui ren 
    3 weeks ago
  7. Tracy Marso 
    3 weeks ago
  8. Karen Wilshe 
    4 weeks ago
  9. Priscilla Hurd 
    1 month ago
  10. Kwong-Kit Mary Pu 
    1 month ago
  11. john simko 
    1 month ago
  12. Leslee Collins  
    2 months ago

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