500 Miles to Cure Rett

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10 years ago our granddaughter Hannah was born as a “normal” girl. When she was about 1 year old she started to talk and walk and do things a 1 year old should do. When she was about 18 months old this all changed. She forgot words she had said a day before, and later on could not talk at all anymore. Months later after many doctors’ visits Hannah was diagnosed with Rett Syndrome. Rett happens in about 1 in 10,000 girls. 350,000 girls and women live with Rett. They can’t speak, read, walk, or do anything that’s “normal” for you and me.

In order to help raise money for research to find a cure for Rett, I promise to bike 500 miles in and around Province and Maricopa. If you see me on my orange bike in my orange Rett t-shirt, stop me and we can talk more about my challenge.

My hope is that one day, I will not only be able to see the most beautiful smile in Hannah, but also can talk to her and see her walk again. After all she is a NORMAL girl.


Werner Beck (Grandfather to Hannah)




Vor zehn Jahren wurde unsere Enkelin Hannah als “ganz normales” Mädchen geboren.Als sie ein Jahr alt war konnte sie sprechen, fing an zu laufen und tat alles, was ein einjähriges Mädchen tut. Mit eineinhalb Jahren änderte sich alles. Sie vergaß ihre erlernten Worte, ihre Stimme sollten nicht mehr Worte formen können, nur noch desperates Schreien kam aus ihrem Mund. Sie riss sich die Haare aus und “wusch” sich die ganze Zeit ihre Hände - typische Merkmale für Rett Syndrome. Aber niemand konnte damals die Signale erkennen.

Erst Monate später, nach sehr vielen Arzt- Besuchen, konnte man eine Diagnose stellen: Hannah litt an Rett Syndrome.

Das Rett Syndrome zeigt sich in 1 von 10 000 Mädchen. Man weiß, dass es 350 000 Mädchen / Frauen mit Rett Syndrome gibt. Sie können nicht sprechen, laufen, lesen oder Dinge tun, die für uns alle selbstverständlich sind.

Ich, Werner Beck, habe Hannah und den anderen Mädchen mit Rett versprochen, 500 miles/ 804,7 km mit dem Rad in Province und Maricopa zu fahren. Mein Ziel ist es, einen Betrag von $ 5.000 für die Forschung durch Spenden zusammen zubekommen, damit Rett Syndrome eine Kur bekommt und bald Geschichte sein wird.

Wenn ihr mich auf meinem orangen Fahrrad und dem orangen Rett-Syndrome t-shirt seht, bitte stopped mich und ich kann euch mehr über meine Aktion/ Herausforderung erzählen.

Ich habe die Hoffnung, dass ich eines Tages nicht nur Hannah’s Lächeln sehen werde, sondern auch ihre Stimme hören kann und dass sie mit Opa spazieren gehen wird.

Denn wir wissen, sie ist ein ganz NORMALES Mädchen, was nur darauf wartet, all dies tun zu koennen.

Werner Beck (Hannah’s Opa)


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 (24)

  1. Bruce Schneider 
    4 months ago
    $50
  2. Elke Menzel 
    4 months ago
    $50
  3. Ralf Zeckay 
    4 months ago
    $30
  4. Marlene Gruehn 
    4 months ago
    $30
  5. Werner Beck 
    4 months ago
    $75
  6. Patti Mettler  
    4 months ago
    $10
  7. Shelden Martin 
    4 months ago
    $500
  8. Gail Broom 
    4 months ago
    $35
  9. Carl Smith  
    4 months ago
    $50
  10. Markus Beck 
    4 months ago
    $100
  11. Werner Beck 
    5 months ago
    $57
  12. THERESA FOLKERTH 
    5 months ago
    $50
  13. Bert Gillespie 
    5 months ago
    $25
  14. Ron Nemeth 
    5 months ago
    $50
  15. Michael Beck 
    5 months ago
    $100
  16. Edward Dunn 
    5 months ago
    $10
  17. Fawn Schierenberg 
    5 months ago
    $100
  18. Gary Fritz 
    5 months ago
    $100
  19. Lowelll Hettinger 
    5 months ago
    $50
  20. LaVonne Braunschweig 
    5 months ago
    $50
  21. Richard Shane 
    5 months ago
    $100
  22. Anonymous 
    5 months ago
    $25
  23. Werner Beck 
    5 months ago
    $50
  24. Werner Beck 
    5 months ago
    $100

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