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Connor's Superheroes!

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Team fundraiser1 membersAtaxia Telangiectasia Children's Project, Inc.
raised of US$185,000 target
Help find a cure for kids with ataxia-telangiectasia and #bethehope!


Hello, and thank you for being one of Connor's Superheroes!

To look at almost 3 ½-year-old Connor is to see a blue-eyed, always happy little boy, a bit wobbly on his feet, who loves the outdoors, superheroes, Legos, monster trucks and adventures.

But Connor is no ordinary toddler.

He was born with ataxia-telangiectasia, or “A-T”, an ultra-rare, progressive, degenerative disease that unleashes a cascade of severe symptoms such as deteriorating muscle control, slurred speech, respiratory infections, feeding issues and a predisposition to numerous types of cancer. The prognosis is grim. Children born with A-T are usually dependent on wheelchairs by the age of 10, having lost the ability to control their muscles, and they rarely survive their 20s. There is no cure and no effective treatments that can manage the neurological aspects of the disease. There are about 400 known cases of A-T in the United States.

It is true that every disease is incurable or untreatable until it is not. While we continue to hold out hope for a brand-new therapy or cure that can reverse Connor's genetic condition- perhaps a gene therapy- we have joined an international effort to locate an existing drug or investigational compound that might slow the degeneration going on in Connor’s brain cells and others like him.

The non-profit A-T Children’s Project is spearheading the search for a cure—ordinarily a needle in a haystack event were it not for the development of technologies that have helped accelerate the process. We are working with the A-T Children’s Project to raise $185,000 needed to fund a repurposing screen with the goal of finding a drug that can be tested in children with A-T to slow the progression of the disease or, ideally, to find a cure. The repurposing screen will begin with the development of customized assays to detect the functional rescue of cells from children with A-T, followed by the screening of large libraries of compounds, both approved and investigational, using those assays. Charles River Laboratories is the scientific institution involved in this critical study.

We (and the A-T Children's Project) are passionate about pursuing this repurposing screen as we know we are in a race against time to find a cure for Connor and all other children affected by this debilitating and deadly disease. We are committed to investigating new ways to extend Connor's life, mitigate any unnecessary hardships he may face, and ideally find a cure, and if not for Connor, then for future generations of children born with A-T or other rare diseases.

Beyond hoping that these efforts will find a treatment from among existing drugs much sooner than if they had to discover them from scratch, the A-T Children’s Project also sees this project as a major milestone for A-T research. They're thrilled that, rather than relying on an academic lab to try to conduct this important effort, a world class organization like Charles River Laboratories is bringing its industrialized, high-throughput approach to this ultra-rare disease. The A-T Children's Project is gaining access to the same technologies and rigor that global pharmaceutical companies receive which is extraordinary, especially in the rare disease world.

We are on a mission to raise $185,000 for the repurposing screen. If you would like to be a part of this groundbreaking effort to find a cure for Connor and all other children with A-T, please consider a tax deductible donation to the A-T Children's Project via the link on this page or via the QR code below.

Additionally, if you feel compelled, please share this page with anyone and everyone on all social media platforms!

We cannot thank you enough for your support!

With love,

Dan and Michelle Graban

FYI- please check out this article from Charles River which discusses the repurposing screen we're trying to fund for all children with A-T:

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About the campaign

Help find a cure for kids with ataxia-telangiectasia and #bethehope!

About the charity

Ataxia-telangiectasia (A-T) is a genetic disease that causes loss of muscle control & balance, cancer, lung disease & immune system problems in children & young adults. We support innovative research to optimize disease management, develop new treatments and find a cure.

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