Dream Big for Ema 2019

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It’s hard to believe that another year has gone by, and Ema is now 8 years old. Since we started Ema’s Rettgive campaign in 2016, we raised over $35,000 thanks to your generosity.

Ema has been very busy over the last year. She went skiing again this winter and had another awesome experience. She also participated in the St. Anthony’s Triathlon in St. Petersburg, and enjoyed her 3rd baseball season with the Cubs. Ema graduated 1st grade in May, and is now at Dream Oaks summer camp, where she is swimming, kayaking, and horseback riding. She is looking forward to starting school in the fall where she will be in the mainstream 2nd grade classroom.

We are eagerly anticipating the 1st clinical trial from Avexis which is scheduled to be out sometime this year. This gives us hope that a cure is on the horizon, and drives us to fight for Ema every single day.

Ema is growing up and maturing into a very special and remarkable young lady. She spreads love and kindness everywhere she goes, all without saying a word. Her eyes tell her story, and her smile captures the hearts of everyone around. We are, once again, asking for your help in finding a cure for Rett Syndrome. We TRULY believe this is in the near future, and any amount is greatly appreciated.


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 (3)

  1. Carole Friedman 
    3 months ago
    $100
  2. Bob and Margot Offner 
    3 months ago
    $1,000
  3. Stuart and Lenka Offner 
    3 months ago
    $5,000

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