More 4 Marlowe

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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 (33)

  1. Sharon Johnson 
    1 hour ago
    50
  2. Monica Prelle 
    2 days ago
    20
  3. Darlene Howell 
    2 days ago
    250
  4. Betsy & Rich Randolph 
    3 days ago
    100
  5. The Gerard Family 
    3 days ago
    250
  6. Robert Ramirez 
    3 days ago
    250
  7. Jean Bishop 
    4 days ago
    25
  8. Keith Lederman 
    5 days ago
    10
  9. Erin McCabe 
    5 days ago
    50
  10. Merle Ann Ganong 
    6 days ago
    25
  11. DUSTY GARUS 
    6 days ago
    1,000
  12. Elysia Fischbach 
    1 week ago
    50
  13. Sharon OBrien 
    1 week ago
    50
  14. Cinnamon Valdiviezo 
    1 week ago
    50
  15. Amber Flynn 
    1 week ago
    100
  16. roberta lagomarsini 
    1 week ago
    25
  17. Abbi Sarthou 
    1 week ago
    50
  18. Patti Gillespie 
    1 week ago
    25
  19. Charlotte Shafer 
    1 week ago
    100
  20. Ben Boyd 
    1 week ago
    100
  21. Kathy & Paul Reger 
    1 week ago
    200
  22. Jenny Judge  
    1 week ago
    100
  23. Matt & Sarah Ramirez 
    2 weeks ago
    250
  24. Rich and Franz Ryerson 
    2 weeks ago
    100
  25. Dominique Brassier 
    2 weeks ago
    250
  26. Jason Switzer 
    2 weeks ago
    25
  27. Denise Molnar 
    2 weeks ago
    1,000
  28. Benjamin Wisner 
    2 weeks ago
    100
  29. Jenna Henkes 
    2 weeks ago
    25
  30. Julia Marino 
    2 weeks ago
    200
  31. Benjamin Ryerson 
    2 weeks ago
    100
  32. Patricia Stump 
    2 weeks ago
    1,000
  33. Jeni Shaver 
    2 weeks ago
    25

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