My Dream for Presley

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We all have dreams, some significantly more important than others.  They inspire and motivate us.

Rett Syndrome is a heartbreaking neurological and developmental disorder diagnosed almost exclusively in girls.  Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorder…all in one little girl.  My niece, Presley, is one of those little girls.

Despite the debilitating nature of the disorder, Rett Syndrome is one of the few neurological disorders to demonstrate dramatic reversals in the lab.  The advances in science behind Rett Syndrome have been encouraging.  But how long should these children have to wait for a cure?  They shouldn’t have to. They deserve our best effort to bring an end to this horrible disorder.

The truth is, I would give my life for Presley to be free of this disorder, an impossibility for sure.  But there are things that I can do.  I owe her that.  This year I plan to race in the 2017 Arizona Ironman in Presley’s name.  My goal is to raise both awareness and funding to find a cure, in hopes that one day this beautiful little girl can be free of this disorder.  To be free of her quirky little tics.  To watch her run and play with her little brother and many cousins.  And maybe even just to hear her talk.

That is my dream.

Bill Owsley


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. Kelsie Lewis 
    2 weeks ago
    $100
  2. Anonymous 
    2 weeks ago
    $100
  3. Caitlin Larkin 
    2 weeks ago
    $50
  4. Davita Solter 
    2 weeks ago
    $10
  5. Jessica Catalanotte 
    2 weeks ago
    $50
  6. Loralee Owsley 
    2 weeks ago
    $100
  7. Daniell Elperin 
    3 weeks ago
    $1,000
  8. William Owsley 
    3 weeks ago
    $1,000

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