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 (26)

  1. Nili & Jerry Krassner 
    4 months ago
    $100
  2. Edgar Weinsberg 
    6 months ago
    $100
  3. goldie bertenthal 
    9 months ago
    $100
  4. Jerry, Nili and Mark Krassner 
    10 months ago
    $100
  5. Caryn Koffman 
    11 months ago
    $100
  6. Adam Paxton 
    1 year ago
    $250
  7. Andrew Passmore 
    1 year ago
    $200
  8. James Nguyen  
    1 year ago
    $250
  9.  
    1 year ago
    $100
  10. David & Supat Offner 
    1 year ago
    $200
  11. Anonymous  
    1 year ago
    $20
  12. Alissa Meyers 
    1 year ago
    $50
  13. Ilene Brotman 
    1 year ago
    $100
  14. Kevin Miner 
    1 year ago
    $100
  15. Fiona and Mark Joffe 
    1 year ago
    $50
  16. Myra Carreon 
    1 year ago
    $250
  17. Nili & Jerry Krassner 
    1 year ago
    $100
  18. Mark Krassner 
    1 year ago
    $100
  19. elise zahn 
    1 year ago
    $100
  20. Carole Friedman 
    1 year ago
    $100
  21. In Memory of Clarice Offner 
    1 year ago
    $50
  22. Terry E Rehfeldt 
    1 year ago
    $500
  23. Bob and Margot Offner 
    1 year ago
    $750
  24. Maliha Ali 
    1 year ago
    $500
  25. Alan & Jennifer Maltbie 
    1 year ago
    $1,000
  26. Stuart and Lenka Offner 
    1 year ago
    $5,000

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