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 (65)

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

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