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

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