Samantha Lopez – Reverse Rett NYC 2018

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Imagine the symptoms of Autism, Cerebral Palsy, Epilepsy, Anxiety Disorders and Parkinson's all in one little girl......that is Rett Syndrome...... and the unfortunate reality for Samantha. She turned 17 this past August and continues to be a happy, easy going teenager in spite of all the limitations she has because of Rett Syndrome. We feel incredibly fortunate but I’m not going to sugarcoat anything—Rett is not easy, physically and emotionally, for Samantha first and foremost, but also for us. She can’t talk, although she communicates with us in so many other ways, especially using her eyes. She has repetitive hand motions that make it difficult for her to pick things up, although she can use her hands pretty well to eat (her skills seem to diminish with vegetables and return with her favorite snacks).

It’s clear that Samantha’s mind is active and she is very social. She goes to school every day. She loves her teachers and the other children; and they love her. She is full of personality, humor, and even some mischievousness. She smiles and giggles a lot, her eyes are bright and knowing, but she is trapped in a body that doesn’t function properly because of Rett. Instead of going to homecoming dances, taking driving lessons and applying to colleges like other teens her age, she battles Rett with a smile, every second of every day.

We hope you can join us on November 7 as we come together to support RSRT. If you cannot attend our gala please consider donating here. No amount is too small---every bit brings us closer to a cure!

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 (37)

  1. Fiampack Corp 
    3 months ago
    $1,000
  2. Gail Dorfman 
    3 months ago
    $360
  3. Ann Landau 
    4 months ago
    $100
  4. Anonymous 
    4 months ago
    $50
  5. The Lerman Family 
    4 months ago
    $100
  6. Susan Bilt 
    4 months ago
    $25
  7. Merle Winters 
    4 months ago
    $25
  8. Lynda Hatch 
    4 months ago
    $50
  9. Les & Fran Kasper 
    4 months ago
    $18
  10. Denise Tortorelli  
    4 months ago
    $50
  11. Ronald Lerner 
    4 months ago
    $25
  12. Judy & Steve Reichman 
    4 months ago
    $36
  13. Linda Fuller 
    4 months ago
    $100
  14. Susan Cabrera 
    4 months ago
    $118
  15. Maddy and Charlie Okun 
    4 months ago
    $18
  16. Adele Gilman 
    4 months ago
    $36
  17. Anonymous 
    4 months ago
    $25
  18. Jennifer Faber  
    4 months ago
    $100
  19. Dianr Howell 
    4 months ago
    $250
  20. Dianr Howell 
    4 months ago
    $250
  21. Amy Bloom 
    4 months ago
    $50
  22. eric israel 
    4 months ago
    $150
  23. Juliana Regan 
    5 months ago
    $50
  24. randi leeds 
    5 months ago
    $150
  25. Malinda Linkhorst  
    5 months ago
    $50
  26. Lara Edelstein  
    5 months ago
    $50
  27. Beatrice Halstead 
    5 months ago
    $25
  28. Lisa Jay 
    5 months ago
    $50
  29. Sharon Manno 
    5 months ago
    $25
  30. Anonymous 
    5 months ago
    $250
  31. Anonymous 
    5 months ago
    $50
  32. Stephanie Dahlquist  
    5 months ago
    $50
  33. Robin Levinsohn 
    5 months ago
    $50
  34. Jamie Barg  
    5 months ago
    $50
  35. Brooke Surgan 
    5 months ago
    $50
  36. Debra Gay 
    5 months ago
    $100
  37. Wendy Schulze  
    5 months ago
    $50

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