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 (32)

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

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