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 (67)

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

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