A Cure for Hannah

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For my 70th birthday in December, I am asking for donations to the Rett Syndrome Research Trust - Reverse Rett for a cure. I have chosen this non profit because their mission means a lot to me and my family, and I hope you will consider contributing as a way of celebrating with me. Every little bit will help us reach our goal.

About Hannah and what it means to live with Rett Syndrome:

Written by Beth Johnsson


“Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders all in one child."

This is Rett Syndrome. This is Hannah.

Hannah was born in 2007 after a textbook pregnancy and completely normal delivery. For 18 months she developed normally and was a picture of health, happiness and everything any parents could ask for. But then things changed. Her hands started to shake, she began crying uncontrollably, she pulled out chunks of her own hair, and her development slowed. Between her 2nd and 3rd birthday, the skills she had acquired started to slip away – her hand function deteriorated, her words vanished, her mobility faltered. One month before her third birthday, on February 3rd, 2010, after 9 months of tests, we were told she had Rett Syndrome.


We didn’t know then what Rett Syndrome was, but we quickly learned that it was far more devastating than we had feared. We learned that this little girl before us would most likely lose all her mobility, all her speech, all her hand function. We learned that she would develop epilepsy, scoliosis, digestive issues, breathing difficulties and heart problems. We learned that she would never read, write, skip, climb a tree, sing a song, ride a bike or have her own family. We learned that her future was one of regression, uncertainty and total dependence. We were broken.



But then we learned something else. We learned that in 2007, Rett Syndrome had been reversed in mice, and that a charity called Reverse Rett was working to fund research to replicate that reversal in girls. We learned that the hope for a cure is tangible, and that there IS an alternative possible future for Hannah. As parents, this became the only option – we needed to support this charity and do everything we could to help fund the research to make that future happen.

Hannah is now 10 years old and many of those difficulties we feared might happen, have developed. She has no words, her mobility is highly limited, her hand function is poor, her breathing is laboured, she has partial epilepsy and she is fully dependent on us for every basic function. But she is also engaged, alert, sociable, sparkling and mischievous. Rett Syndrome has locked her in to a body which betrays her mind every second of every day, but her brain is not damaged and she has the same potential as any other child, if we could only set her free.

Uschi Beck, Hannah’s Oma and Grandmother

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 research to a cure 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.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (12)

  1. Anonymous 
    6 months ago
    $20
  2. Michele Johnson 
    6 months ago
    $40
  3. bruce schneider 
    6 months ago
    $50
  4. Hank Johnson 
    6 months ago
    $50
  5. Delores Tucker- Gotch 
    6 months ago
    $25
  6. Eileen Shane 
    7 months ago
    $100
  7. Michael & Kristin Beck 
    7 months ago
    $50
  8. Tom Perkovich 
    7 months ago
    $25
  9. Anonymous 
    7 months ago
    $20
  10. Markus Beck 
    7 months ago
    $100
  11. Ron Nemeth 
    7 months ago
    $50
  12. Werner Beck 
    7 months ago
    $100

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