More 4 Marlowe

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**UPDATE: Marlowe’s Dad Coaches US Team to Gold!**


It’s been amazing watching Marlowe’s dad, Mike Ramirez, celebrate on the slopes with his US Snowboard team as they rack up gold medals in Pyeongchang for the 2018 Winter Olympics. We are thankful for Mike and his athletes for joining our cause and bringing awareness to Rett Syndrome. If you haven't seen it, watch this video of the team supporting the #ReverseRett campaign and "reversing" their gear.



**UPDATE: Marlowe's Cousin Raises $40,000!**


Marlowe’s 10-year-old cousin Ava just raised $40,000 for research by auctioning off her pig at a 4-H fair in Deschutes County Oregon. This remarkable act of generosity has surpassed the campaign goal 4 times over!


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The magical setting of Salt Lake City in the glow of the night...literally! On July 29th, at 9pm, team MORE4MARLOWE will be running a 5k Foam Glow run. White t-shirts, black lights, and lots of neon-colored foam! It should be a fun time for all, especially to share Marlowe’s story and the overwhelming need for funding to cure Rett Syndrome.

Marlowe is definitely a glowing light in our family. Her eyes twinkle with mischief and cheekiness. Lately she has been all about watering her plants and flowers in the garden. Won’t it be wonderful the day she can do it all by herself?! She is all about having a good time, watching Little Einsteins or Moana & listening to some good music. Classical music is her favorite but she can jive with some Creedence Clearwater Revival. She has endured so much in her life, and it seems like lately her battle has gotten a little bit more difficult. Rett Syndrome makes it impossible for her to walk, or crawl, or even just sit up now independently with the progression of her scoliosis. Her inability to vocalize her feelings, thoughts, wants and needs has been taken from her. She is constantly fighting a battle to keep her lungs clear from aspirating. New symptoms keep popping up just when we’ve figured out how to manage the last. But through it all, her positive demeanor keeps us on track to kick some Rett BUTT!!



 


The Roadmap to a Cure is the golden prize awaiting us all. Each and every day is one day closer. The cure is in sight and we want it so bad we can hardly breath. We are running now, so she can later! Please help with whatever you can. This is ALL going to research, and contributions are tax deductible.

Shoshanna & Mike Ramirez


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. Ray & Charlotte Kacmar 
    10 months ago
    $500
  2. Brooke Sanchez 
    1 year ago
    $45
  3. Ana & Noah Garus 
    2 years ago
    $9,500
  4. Marjan Hewson 
    2 years ago
    $50
  5. Rich and Franz Ryerson 
    2 years ago
    $100
  6. Bo Warren 
    2 years ago
    $10
  7. Tessa Millican 
    2 years ago
    $25
  8. Anonymous 
    2 years ago
    $150
  9. Charlotte, Bruno & Audrey Cretney 
    2 years ago
    $50
  10. Teddy Monney 
    2 years ago
    $200
  11. Auction of Squeal the Pig  
    2 years ago
    $39,036
  12. Megan Ramirez 
    2 years ago
    $25
  13. Suzanne Pibworth 
    2 years ago
    $50
  14. alexis beebe 
    2 years ago
    $25
  15. William Hewson 
    2 years ago
    $100
  16. Marjan Hewson 
    2 years ago
    $100
  17. Gerald Jackson 
    2 years ago
    $50
  18. Russell Probert 
    2 years ago
    $25
  19. Margaret Rashti 
    2 years ago
    $1,000
  20. Nadine Baggs 
    2 years ago
    $500
  21. Jen, Mike & Campbell Burrows 
    2 years ago
    $50
  22. Tanmy Nguyen 
    2 years ago
    $50
  23. Anna Heimburger 
    2 years ago
    $100
  24. Melissa Chavez 
    2 years ago
    $250
  25. Bob and Lenore Stein 
    2 years ago
    $100
  26. Jenna Henkes 
    2 years ago
    $100
  27. Monika Pasquerello 
    2 years ago
    $50
  28. Anna Skiadas 
    2 years ago
    $25
  29. Dan & Pam Ramirez Ramirez 
    2 years ago
    $200
  30. LUCINDA CRUMP 
    2 years ago
    $75
  31. Judd & Jenna Henkes 
    2 years ago
    $500
  32. Diana Vaz 
    2 years ago
    $25
  33. Lisa Hewson 
    2 years ago
    $100
  34. Susan Bagley 
    2 years ago
    $25
  35. Sharon Johnson 
    2 years ago
    $50
  36. Monica Prelle 
    2 years ago
    $20
  37. Darlene Howell 
    2 years ago
    $250
  38. Betsy & Rich Randolph 
    2 years ago
    $100
  39. The Gerard Family 
    2 years ago
    $250
  40. Robert Ramirez 
    2 years ago
    $250
  41. Jean Bishop 
    2 years ago
    $25
  42. Keith Lederman 
    2 years ago
    $10
  43. Erin McCabe 
    2 years ago
    $50
  44. Merle Ann Ganong 
    2 years ago
    $25
  45. DUSTY GARUS 
    2 years ago
    $1,000
  46. Elysia Fischbach 
    2 years ago
    $50
  47. Sharon OBrien 
    2 years ago
    $50
  48. Cinnamon Valdiviezo 
    2 years ago
    $50
  49. Amber Flynn 
    2 years ago
    $100
  50. roberta lagomarsini 
    2 years ago
    $25
  51. Abbi Sarthou 
    2 years ago
    $50
  52. Patti Gillespie 
    2 years ago
    $25
  53. Charlotte Shafer 
    2 years ago
    $100
  54. Ben Boyd 
    2 years ago
    $100
  55. Kathy & Paul Reger 
    2 years ago
    $200
  56. Jenny Judge  
    2 years ago
    $100
  57. Matt & Sarah Ramirez 
    2 years ago
    $250
  58. Rich and Franz Ryerson 
    2 years ago
    $100
  59. Dominique Brassier 
    2 years ago
    $250
  60. Jason Switzer 
    2 years ago
    $25
  61. Denise Molnar 
    2 years ago
    $1,000
  62. Benjamin Wisner 
    2 years ago
    $100
  63. Jenna Henkes 
    2 years ago
    $25
  64. Julia Marino 
    2 years ago
    $200
  65. Benjamin Ryerson 
    2 years ago
    $100
  66. Patricia Stump 
    2 years ago
    $1,000
  67. Jeni Shaver 
    2 years ago
    $25

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