Dream Big for Ema

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Ema will be turning 6 years old on June 19th.  Last year around this time, we started a RettGive campaign in hopes of raising money to fund the much-needed research to find a cure for Rett Syndrome. We were overwhelmed with the love and support from our family and friends, and were able to raise almost $14,000, which has helped the Rett Syndrome Research Trust make great progress.

Since we last reached out to you, Ema has also made great strides.  She graduated VPK and is looking forward to starting kindergarten in the fall. She made wonderful friends at school.  Thanks to the Miracle League of Manasota, she played her first season of little league baseball.  During our annual ski trip to Utah, Ema was able to ski for the very first time with the help of the National Ability Center in Park City.

Unfortunately, she was also diagnosed with partial complex seizures. She was started on medications, and has them under control. In fact, since starting her seizure medications, she is much happier and stronger.

RSRT recently launched the 3-year strategic research plan, Roadmap to a Cure. A critical goal of this plan is to begin clinical trials for gene therapy. This gives us incredible hope for Ema’s future. However, this research has a cost of $33 million, and RSRT relies on families affected by Rett and their networks of friends to make this research possible.

The more time goes on, the more we realize how strong Ema is. She is now doing things that, at the time of diagnosis, we never thought would be possible. Now we need you to be just as strong as Ema. Dream big and please consider supporting the Roadmap to a Cure by donating to RSRT. Any amount, no matter how small, counts and is greatly appreciated.

Stuart & Lenka 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 (25)

  1. Marilyn Stamberg 
    3 weeks ago
    $50
  2. Ron & Ilene Brotman 
    2 months ago
    $100
  3. Andrew Krinsky 
    3 months ago
    $250
  4. Mitchell & Laurie Beller 
    3 months ago
    $50
  5. caryn and elliot Koffman 
    3 months ago
    $100
  6. Laurie & Mitchell Beller 
    3 months ago
    $50
  7. Lyle Kotler 
    4 months ago
    $100
  8. Michele Lipman 
    4 months ago
    $100
  9. David Lepore 
    4 months ago
    $100
  10. Carole Friedman 
    4 months ago
    $100
  11. David & Phyllis Bertenthal 
    4 months ago
    $18
  12. Kevin Miner 
    4 months ago
    $50
  13. Helen LiMarzi 
    4 months ago
    $25
  14. Manny & Myra Rodriguez 
    4 months ago
    $100
  15. Fiona Joffe 
    4 months ago
    $25
  16. Tim Freeman 
    5 months ago
    $100
  17. Evan Quintero 
    5 months ago
    $50
  18. Janka Stovall 
    5 months ago
    $250
  19. Alan Maltbie 
    5 months ago
    $1,000
  20. Jane Krim 
    5 months ago
    $100
  21. Noam Weiss 
    5 months ago
    $1,000
  22. Alissa Meyers 
    5 months ago
    $50
  23. Elise Zahn 
    5 months ago
    $100
  24. Margot & Bob Offner 
    5 months ago
    $500
  25. Stuart and Lenka Offner 
    5 months ago
    $5,000

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