Courtney Robins' Fundraiser:

Team Zoe Half Marathon for Rett Syndrome

Courtney's Photo
Courtney's Photo
Courtney's Photo
Courtney's Photo
Courtney's Photo

Courtney

Just added some photo's from the Rett Gala 2010

via Crowdrise 3 years ago

BENEFITING: Rett Syndrome Research Trust

ORGANIZER: Rachel

EVENT DATE: Jun 26, 2011

THE STORY:

Dear Friends and Family,

This year I have decided to challenge myself and run the Stratton Faxon Fairfield Road Race. It is a half marathon (13 miles) that takes place on 6/26/11 in Fairfield, CT. This is going to be the longest and most challenging run that i have ever done. This is such a big event for me that I have decided to make it even more meaningful and participate in the fundraising for "Team Zoe" and the Rett Foundation. 

This is my dear family friend's daughter, Zoe. She unfortunately has a disorder called Rett Syndrome. 

Rett Syndrome is a childhood neurological disorder that affects 1 in every 10,000 girls. Rett syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use. Rett syndrome occurs almost exclusively in girls. Most girls live in wheelchairs, have seizures, almost no purposeful use of their hands, are unable to speak, and have feeding tubes.

Zoe was born on April 22, 2005.  As a baby, Zoe was so beautiful with the best personality.  She always wanted to be around people and to be loved by everyone.  Zoe had just learned to walk and say a few words, then her parents noticed that her development had begun to slow down. On April 22, 2008,  a blood test confirmed that  little Zoe had Rett Syndrome.

Rett often strikes just after the child has learned to walk and say a few words, and begins to drag their development backwards. There are many symptoms of Rett Syndrome including:

 

  • Regression, including loss of speech, motor control and functional hand use
  • Autonomic instability and sleep disturbances
  • Autistic behaviors and sensory issues
  • Impaired cardiac, circulatory and digestive functions
  • Parkinsonian tremors
  • Many varieties of seizures, often untreatable
  • Anxiety
  • Apraxia
  • Dystonia
  • Orthopedic problems including scoliosis and osteopenia

Zoe is considered one of the 'lucky ones". She currently walks, and has some use of her hands. Her biggest challenge is that she is unable to speak. For someone who is 6 years old this is a tremendous handicap. Zoe cannot express what she is feeling, cannot tell us when she is in pain, what she wants to eat, drink, play with or watch on tv. It pains me to imagine how isolated she must feel. Zoe is unable to do any self care and requires 24hr assistance.

So now for some good news.....Rett Syndrome has been reversed in a mouse model. Scientists are making amazing strides in their research and we truly believe Rett Syndrome will become the first reversible neurological disorder. Rett Syndrome is grossly underfunded. The charity I am running for is Rett Syndrome Research Trust - www.RSRT.org. 96% of every dollar donated goes directly towards researching a cure for Zoe and the thousands of other girls who suffer from Rett Syndrome each day.

Many thanks for your support and don’t forget to forward this to anyone who might want to support Team Zoe.

XOXO,

Courtney

DONATE

To This Fundraiser

$580

MONEY RAISED
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  • Courtney Robins

    $100

  • Lisa Buzin

    $10

  • Chet and Beverly Forman

    $250

  • Ben & Vanessa Loh

    $20

  • John Cannon

    $50

  • Kathianne Robins & Dennis Stern

    $100

  • Geeta & Naresh Motiani

    $50

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Fundraise for this Campaign

The Team: $15,253 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Rachel Rothschild

Amount Raised:

$6,627

Fundraiser Title

anne mitchell

Amount Raised:

$3,620

Fundraiser Title

Hope Goldstein

Amount Raised:

$2,821

Fundraiser Title

Jill Yusko

Amount Raised:

$1,325

Fundraiser Title

Courtney Robins

Amount Raised:

$580

Fundraiser Title

Laura Chang

Amount Raised:

$100

Fundraiser Title

Marc Kitay

Amount Raised:

$100

Fundraiser Title

susan saraf

Amount Raised:

$50

Donor Comments

Geeta & Naresh Motiani

Geeta & Naresh Motiani

DONATION: $50

Such an amazing cause, Good Luck Courtney! 3 years ago

Kathianne Robins & Dennis Stern

Kathianne Robins & Dennis Stern

DONATION: $100

3 years ago

John Cannon

John Cannon

DONATION: $50

3 years ago

Ben & Vanessa Loh

Ben & Vanessa Loh

DONATION: $20

3 years ago

Chet and Beverly Forman

Chet and Beverly Forman

DONATION: $250

3 years ago