Ivan J Garel-Jones' Fundraiser:

LA Marathon - Rett Syndrome

Ivan J's Photo

Ivan J

my project goes to eleven...

via Crowdrise 3 years ago

THE STORY:

I am running the LA Marathon on March 20th 2011 in support of the Rett Syndrome Research Trust.

What is Rett Syndrome?

Rett Syndrome is the most physically disabling of the autism spectrum disorders. It strikes at random in early childhood, affecting little girls almost exclusively. Many girls live into adulthood, requiring total, 24-hour-a-day care. There is no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures. First recognized only 25 years ago, the prevalence of Rett Syndrome equals that of Cystic Fibrosis, Huntingtons and ALS but is vastly underfunded in comparison to those disorders

Why am I supporting this Charity?

I know a family that has a daughter with Rett Syndrome. I have two daughters. I wanted to help.

Why should you support it?

See below. Scientists were able to reverse the effects of the disease in mice in 2007. If a cure can be found for Rett's it could also have knock on effects for other forms of autism and schizophrenia.

What does the Research Trust do?

The goal of the Rett Syndrome Research Trust is to deliver clinical trials of a novel treatment strategy within five years. The Rett Syndrome Research Trust ia a 501(c)(3) nonprofit organization intensively focused on the development of treatments and cures for Rett Syndrome and related MECP2 disorders. The strength of the Trust is based on the guidance of founders and advisors who are largely responsible for the major advances in Rett research over the past decade.

In February of 2007, the journal Science published a paper by Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late stage disease. This remarkable and unexpected result has established a new paradigm for Rett Syndrome and other neuropsychiatric conditions, such as autism and schizophrenia.

The obvious and urgent question the Trust seeks to answer is whether symptoms can be reversed, and normal function restored, in people suffering with Rett Syndrome and MECP2 spectrum disorders. To this end, the Trust has convened a series of international think tanks and developed a comprehensive, strategic portfolio of projects, including the first foray into drug discovery for Rett Syndrome. This plan was developed in concert with, and will be executed by, distinguished scientists who are thought-leaders in their fields.

Neither the government, through the National Institutes of Health (NIH), nor pharmaceutical companies can be relied upon to finance the work that lies ahead. NIH funding mechanisms are not designed to quickly support highly innovative exploration. Pharmaceutical companies will only engage once early drug discovery and clinical development have been undertaken.

A private effort is essential if treatments and cures are to be developed in a time frame that the devastating nature of this disorder demands. RSRT is catalyzing such an effort and invites you to join our cause.

What if I want to read more?

Here are some links

http://rettgirl.org/

http://www.rettsyndrome.org/

http://www.reverserett.org.uk/

DONATE

To This Fundraiser

$5,823

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Ivan J Garel-Jo...

    $100

  • the firestone family

    $100

  • Anonymous

    $300

  • The Reilly Family

    $25

  • Brenda Martino

    $25

  • Julie Haley

    $40

  • Jason Guberman

    $25

  • Marina L.K.

    $30

  • The Milsteins

    $100

  • Mary & John Conlin

    $100

  • Fauvre Family

    $200

  • anderson family

    $100

  • The Childress Family

    $50

  • The Hindshaw Family

    $100

  • The Brandt family

    $500

  • The Webb Family

    $20

  • Tristan Garel-Jo...

    $200

  • The Thomas Family

    $100

  • The Gianopulos family

    $500

  • Julian Garel-Jo...

    $200

  • Lazenby/... family

    $100

  • The Ramsey Family

    $25

  • Roest family from Kenya!

    $50

  • The McCallion family

    $50

  • Fiona and Bruce

    $30

  • Robert

    $30

  • The Epstein Family

    $500

  • Sebastian Garel-Jo...

    $20

  • The Domingue... Family

    $50

  • Robert Baltazar

    $25

  • The Pajaczko... Family

    $30

  • The Denny family

    $100

  • Victoria

    $50

  • Becca

    $11

  • The Coluzzi family

    $100

  • Linda Steinman

    $250

  • Amy Baker and Juan Montoya

    $100

  • carol lee

    $20

  • The Smith Family

    $300

  • Andrea Kelley

    $20

  • Cynthia Shapiro

    $50

  • The Crime Expert in NY

    $50

  • Elvia Flores

    $25

  • C L DeWerd

    $25

  • Brian Zagorski

    $50

  • Valle & Wehage

    $125

  • Emily Brecher

    $100

  • Becky Batol

    $25

  • Karen Grant-Se...

    $50

  • Spencer and Harry Newman

    $25

  • Donna Redier Linsk

    $152

  • The Cox's

    $50

  • Frances and Steve Berman

    $100

  • Kayte, Tim and Georgie

    $30

  • The Ellingtons

    $40

  • The Hayman Family

    $250

  •  
  •  
  •  
 

116% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $5,823 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Ivan J Garel-Jones

Amount Raised:

$5,823

 

116% Raised of $5,000 Goal

Fundraiser Title

Elvia Flores

Amount Raised:

$0

Donor Comments

Ivan J Garel-Jones

Ivan J Garel-Jones

DONATION: $100

3 years ago