Magnolia – Our SOUPERhero!

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It began with a post on the blog, Kveller. Sara's mom, Marilyn, forwarded Jenny Tesler's post about her daughter, Magnolia. Something about Jenny's story touched Sara and her Mom. Written shortly after Hurricane Irma, Jenny asked - Would Magnolia be able to survive a storm? Would they be able to evacuate? Because Magnolia has very special needs. She suffers from a rare neurological disorder called Rett Syndrome. Rett is progressive, so far Magnolia has lost her ability to speak and use her hands. She experiences frequent seizures and often has difficulty breathing. She also requires an eye gaze technology computer to communicate.

Magnolia wasn't born this way. This cruel, progressive disease began in Magnolia at the age of three. This lively, boisterous little girl slowly but surely began to regress and lose skills. Unfortunately, this is the case for hundreds-of-thousands of other girls and boys that are victims of this vicious disease. Rett knows no boundaries - economic, geographic, race - Rett is equally cruel to everyone.

Something about Magnolia's story deeply touched Sara and Marilyn. And they wanted to help. The good news is that a potential cure is on the horizon. One of the only things standing in the way of a cure is money. Money to fund research.

Sara and Marilyn have started a fundraising effort to help find a cure for Rett for Magnolia, Lilliana, Eleanor, McKayla, and so many more. Sara and Marilyn's company, Soupergirl, will be raising money all month to help fund this critical research. Come visit us at our stores in DC or donate here. Thank you, so very much.

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 (37)

  1. Sara Polon 
    8 months ago
    $500
  2. Ohr Kodesh Congregation 
    10 months ago
    $100
  3. Ruth Pitlick 
    10 months ago
    $100
  4. Suzy Stone 
    10 months ago
    $25
  5. Sheldon Landsman 
    10 months ago
    $100
  6. Barry Borofsky 
    11 months ago
    $100
  7. Anonymous 
    11 months ago
    $25
  8. George Boggs 
    11 months ago
    $100
  9. Adam Berlin 
    11 months ago
    $50
  10. Jenny Everett 
    11 months ago
    $100
  11. Sarah Osborne 
    11 months ago
    $50
  12. Cameron Krug 
    11 months ago
    $25
  13. Janna Gilbert 
    11 months ago
    $100
  14. Harriet Schulman  
    11 months ago
    $25
  15. Esther Ain 
    11 months ago
    $25
  16. Rita Cohen 
    11 months ago
    $250
  17. BARBARA MECHLER 
    11 months ago
    $50
  18. Dana Boyle 
    11 months ago
    $100
  19. Deborah Saxon 
    11 months ago
    $50
  20. Denise Pace-Sanders 
    11 months ago
    $250
  21. Robin Neviaser 
    11 months ago
    $25
  22. Karen and Bob Meister 
    11 months ago
    $54
  23. Emily Lampe 
    11 months ago
    $20
  24. Abigail Shahar  
    11 months ago
    $25
  25. Anonymous 
    11 months ago
    $36
  26. Jonathan Polon 
    11 months ago
    $18
  27. Anonymous 
    11 months ago
    $100
  28. leslie Neviaser 
    11 months ago
    $18
  29. Bryce Jacobs 
    11 months ago
    $50
  30. Nancy Cutler 
    11 months ago
    $18
  31. Maria Barker 
    11 months ago
    $100
  32. Anja Graves 
    11 months ago
    $50
  33. marilyn and Ira Polon 
    11 months ago
    $500
  34. Esther Goldenberg 
    11 months ago
    $18
  35. Anonymous 
    11 months ago
    $25
  36. Anonymous 
    11 months ago
    $18
  37. Saradona Lefkowitz 
    11 months ago
    $18

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