A Father’s Day & Birthday

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UPDATE | 06.29.16


We have been overwhelmed with the generous support of friends and family. We originally had a goal of raising $10,000 for the research to help find a cure for Ema. But we had such a tremendous response that we have raised our goal to $15,000 to help change Ema’s life and the lives of so many other girls and women with Rett Syndrome. Thank you so much.




Our beautiful daughter, Ema, was born on Father’s Day. She is our first child, and was the best Father’s Day gift ever. Things were great until Ema was about 10 months old and we started noticing that she was not hitting developmental milestones. After visits to countless doctors and therapists, our worst fear became reality. Ema was diagnosed with Rett Syndrome on April 1, 2014.

We felt paralyzed, isolated, and helpless. But we knew we needed to pick ourselves up and start fighting for Ema. This Father’s Day, Ema’s fifth birthday, we are asking you—our family, friends, and colleagues—to join us in that fight. We hope you will contribute to our campaign for the Rett syndrome Research Trust, a non-profit that is advancing science towards effective treatments and one day a cure for Ema and 350,000 other girls and women with Rett.

Rett Syndrome has robbed Ema of her voice. She does not have functional use of her hands and has difficulty walking. She cannot feed or dress herself, and she relies on us for pretty much everything. Imagine being unable to say “I am thirsty” or “My tummy hurts” or “I love you mommy.” Despite all this, Ema has persevered. Like any 4 year old girl, she loves princess stories (especially Frozen and Tangled), music, and horses. She is learning to communicate with an eye gaze device. Her smile melts your heart and her laugh is intoxicating. If we had to sum up Ema in one word, it would be BRAVE. She is the bravest person we know, and she’s the heart and soul of our family, which has grown to include Ema’s brother Benjamin and her sister Hannah.

Remarkably, Rett has been reversed in mice. There is much work ahead to translate a reversal in mice to a reversal in girls. But excellent progress is being made, and with continued support we all can help move the research faster to treatments and a cure. We can’t wait to hear our oldest daughter say “Thank you for all you’ve done for me mommy and daddy. I love you very much.”



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 (68)

  1. Christina & Michael Burke 
    3 months ago
    $1,500
  2. Carole Friedman 
    1 year ago
    $50
  3. guruswamy ramamurthy 
    1 year ago
    $100
  4. Shannon Tyler 
    1 year ago
    $500
  5. Rikin Shah 
    1 year ago
    $100
  6. Maryjane Liebling 
    1 year ago
    $100
  7. Vilma Vega 
    1 year ago
    $250
  8. Todd Sullivan  
    1 year ago
    $40
  9. Radoslava Klein 
    2 years ago
    $150
  10. Laurie and Mitchell Beller 
    2 years ago
    $50
  11. Fiona Joffe 
    2 years ago
    $25
  12. Shelley and Jeff Offner 
    2 years ago
    $150
  13. Jacob & Linda Welch 
    2 years ago
    $50
  14. Lois Mancuso 
    2 years ago
    $50
  15. Evan Quintero 
    2 years ago
    $100
  16. Manny & Sonia Rodriguez 
    2 years ago
    $100
  17. Adam Paxton 
    2 years ago
    $250
  18. Andrew Passmore 
    2 years ago
    $100
  19. Manuel Gordillo 
    2 years ago
    $250
  20. sandra orlandi 
    2 years ago
    $25
  21. Stephen Landreneau 
    2 years ago
    $100
  22. Marilyn Burke 
    2 years ago
    $100
  23. Ellis Denenberg 
    2 years ago
    $50
  24. Mujteba Naqvi 
    2 years ago
    $100
  25. Michele Lipman 
    2 years ago
    $500
  26. Kristen Bohan 
    2 years ago
    $250
  27. David & Elizabeth Lepore 
    2 years ago
    $100
  28. Manny & Myra Rodriguez 
    2 years ago
    $100
  29. Linda Welch 
    2 years ago
    $100
  30. Bonnie zahn 
    2 years ago
    $100
  31. Lavinia Suciu 
    2 years ago
    $250
  32. Ilene & Ron Brotman 
    2 years ago
    $100
  33. Randy Thress 
    2 years ago
    $100
  34. Colleen Treworgy 
    2 years ago
    $10
  35. Frank Wang 
    2 years ago
    $1,000
  36. Noreen Gulotta 
    2 years ago
    $100
  37. Jon Bloom 
    2 years ago
    $25
  38. David & Phyllis Bertenthal 
    2 years ago
    $36
  39. goldie bertenthal 
    2 years ago
    $100
  40. Steven Cohen 
    2 years ago
    $25
  41. Myra Carreon 
    2 years ago
    $200
  42. Carole Friedman 
    2 years ago
    $250
  43. J Ouhri 
    2 years ago
    $50
  44. Julie Larkin 
    2 years ago
    $150
  45. Jennifer Colombo 
    2 years ago
    $100
  46. Terry E Rehfeldt 
    2 years ago
    $500
  47. Christina Burke 
    2 years ago
    $1,000
  48. Kevin and Nancy Miner 
    2 years ago
    $100
  49. Marie Langone  
    2 years ago
    $100
  50. Andrew Krinsky 
    2 years ago
    $1,000
  51. Lori Brand Stall 
    2 years ago
    $100
  52. Shana Reh 
    2 years ago
    $100
  53. Delia Cucoranu 
    2 years ago
    $100
  54. Lauren Knudsen 
    2 years ago
    $500
  55. Alan Maltbie 
    2 years ago
    $1,000
  56. Jennifer Bala 
    2 years ago
    $250
  57. Mark Krassner 
    2 years ago
    $100
  58. Jerry, Nili and Mark Krassner 
    2 years ago
    $180
  59. Alison Schwenger 
    2 years ago
    $20
  60. Janka Stovall 
    2 years ago
    $300
  61. Malik Ali 
    2 years ago
    $200
  62. Elise Zahn 
    2 years ago
    $100
  63. Jane Krim 
    2 years ago
    $25
  64. Alissa Meyers 
    2 years ago
    $100
  65. Lyle Kotler 
    2 years ago
    $100
  66. Bob and Margot Offner 
    2 years ago
    $500
  67. Stuart and Lenka Offner 
    2 years ago
    $1,000
  68. Tim Freeman 
    2 years ago
    $100

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