I Run So That Norah Can One Day Too!

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My sweet grand-niece, Norah was born on September 19, 2008, to my incredible nephew Josh and his wife Megan. Unfortunately she began to miss typical development milestones such as speech and fine motor control, and was diagnosed with Rett Syndrome at age 2 1/2. Rett syndrome is a genetic neurological disorder occurring almost exclusively in females and becoming apparent after 6-18 months of early normal development. The resulting regression leads to lifelong impairments, including lost speech, GI issues, seizures, scoliosis, irregular breathing patterns, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett syndrome require maximum assistance with basic daily activities. I will be participating in the Green Bay Cell Com half marathon on May 21, 2017. In the past, I have run with the intent of raising awareness for Type 1 Diabetes, which my son was diagnosed with at age 6. He is now 26, happy, HEALTHY, and soon to be married. I am almost 60 years old, a few pounds overweight, but still have the ability to put one foot in front of the other and run! My wish is for Norah to do the same someday.

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 (8)

  1. Kathy Reid 
    1 year ago
  2. Susan Udenberg 
    1 year ago
  3. Darlene Kriesel 
    1 year ago
  4. Anonymous 
    1 year ago
  5. Carolyn Eiden 
    1 year ago
  6. Tim Lowe 
    1 year ago
  7. Trudy Warnke 
    1 year ago
  8. Kari Kempka 
    2 years ago

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