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melanie norris' Fundraiser:

Team Rett Boston Marathon 2012

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melanie norris via Crowdrise
February 29, 2012

Feb 29th is rare disease day. Help us help Avery, all donations go to finding a cure for Rett Syndrome.  See more
melanie norris

THE STORY:

Im running the Boston Marathon in Apr to raise funds and awareness for Rett Syndrome. Our daughter Avery was diagnosed with rett Syndrome last year.

RETT SYNDROME ASSOCIATION OF MASSACHUSETTS INC wrote -

Team Rett FundRacers will be raising money for the very first clinical trial of the IGF1 growth hormone currently underway at Children's Hospital Boston in hopes that Rett syndrome can be reversed!

Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.

Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.

This IGF1 groundbreaking clinical trial, now being conducted by Dr. Omar Khwaja and his team at Children's Hospital Boston, is the first disease-modifying therapy to be tested on girls with Rett. Greeted by an outpouring of enthusiasm from the Rett syndrome community, this trial is giving families enormous hope for a brighter future.

Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!

 

$5,205

MONEY RAISED
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  • team Avery

    $1,000

  • meghan brown

    $60

  • Kenneth brown and Elizabeth Wallace brown

    $75

  • Cristina Pilon

    $50

  • Dawn and Wade

    $40

  • La Ronge rec hockey

    $225

  • Heidi Hardcastle

    $50

  • la ronge rec hockey

    $1,000

  • Fionnuala Ruane

    $25

  • Bob and Elaine Mcnabb

    $100

  • Ryan and jimette cossette

    $50

  • Chris Linde

    $25

  • Jessica Stamp-Hillier

    $50

  • costleys raffle

    $2,455

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  •  
  •  
 

104% Raised of $5,000 Goal

The Team: $116,345 TOTAL RAISED SO FAR

Fundraiser Title

Laura Lewis

Amount Raised

$15,351

Fundraiser Title

Courtney Bonzey

Amount Raised

$9,752

 

195% Raised of $5,000 Goal

Fundraiser Title

Megan Kolendrianos

Amount Raised

$8,250

Fundraiser Title

christina oliver

Amount Raised

$7,765

Fundraiser Title

Kathryn Decelles

Amount Raised

$7,549

Fundraiser Title

Jeanne Troy

Amount Raised

$6,501

Fundraiser Title

Geoff Gillard

Amount Raised

$6,500

Fundraiser Title

Courtney Railton

Amount Raised

$6,225

Donor Comments

costleys raffle

costleys raffle

DONATION: $2,455

6 years ago

Jessica Stamp-Hillier

Jessica Stamp-Hillier

DONATION: $50

I am so proud of what you are doing for our beautiful girls. You are one of the most courageous people I have had the opportunity to meet during this journey we are on. Good luck and best wishes to you and your team. Juanita Stamp-Hillier 7 years ago

Chris Linde

Chris Linde

DONATION: $25

7 years ago

Ryan and jimette cossette

Ryan and jimette cossette

DONATION: $50

7 years ago

Bob and Elaine Mcnabb

Bob and Elaine Mcnabb

DONATION: $100

7 years ago

Fionnuala Ruane

Fionnuala Ruane

DONATION: $25

7 years ago

la ronge rec hockey

la ronge rec hockey

DONATION: $1,000

7 years ago

Heidi Hardcastle

Heidi Hardcastle

DONATION: $50

Good Luck Mel! We'll be cheering for you :) 7 years ago

La Ronge rec hockey

La Ronge rec hockey

DONATION: $225

7 years ago

Dawn and Wade

Dawn and Wade

DONATION: $40

7 years ago