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

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