Dream Big for Ema 2018

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We started Ema’s Rettgive campaign in 2016, and since then, with the help of our family and friends, we have raised over $24,000.  With Ema’s 7th birthday upon us, there is some extremely promising news ahead.  Avexis, a clinical-stage gene therapy company, announced moving forward with clinical trials as early as 2019.  This gives us hope that a cure is on the horizon, and this drives us to fight for Ema every single day.

We want to update you on Ema’s progress since we last reached out to you.  This past school year, Ema was enrolled in mainstream kindergarten and thrived in this environment.  She made a lot of new friends at her new school, and her infamous smile is now her signature.  Through the use of her eye gaze device, she told us that she would like to sing and dance!  And speaking of dancing, Ema had a wonderful time at the father-daughter dance at school.

We took our annual ski trip to Utah again, and Ema did even better than last year.  She was able to ski along side her brother for the first time.  In addition, she thoroughly enjoyed her 2nd baseball season in the Miracle League.

As all of you know, Ema is a very special girl.  She captures the hearts of everyone around her and teaches us so much without saying a word.  Now we are asking you to be her voice and please help us on our way to finding a cure for Rett Syndrome.  Any amount, no matter how small, is appreciated.

Lenka & Stuart Offner


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. Anonymous  
    2 days ago
    $20
  2. Alissa Meyers 
    1 week ago
    $50
  3. Ilene Brotman 
    2 weeks ago
    $100
  4. Kevin Miner 
    2 weeks ago
    $100
  5. Fiona and Mark Joffe 
    2 weeks ago
    $50
  6. Myra Carreon 
    3 weeks ago
    $250
  7. Nili & Jerry Krassner 
    3 weeks ago
    $100
  8. Mark Krassner 
    3 weeks ago
    $100
  9. elise zahn 
    3 weeks ago
    $100
  10. Carole Friedman 
    3 weeks ago
    $100
  11. In Memory of Clarice Offner 
    3 weeks ago
    $50
  12. Terry E Rehfeldt 
    3 weeks ago
    $500
  13. Bob and Margot Offner 
    3 weeks ago
    $750
  14. Maliha Ali 
    4 weeks ago
    $500
  15. Alan & Jennifer Maltbie 
    4 weeks ago
    $1,000
  16. Stuart and Lenka Offner 
    4 weeks ago
    $5,000

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