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About

COL6 Fund

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Raising Money to Cure Collagen VI-Related Dystrophy

A Rare Congenital Muscular Dystrophy.

Our son Wesley is 3 years old.  He is growing taller every year, and learning new things every day.  One day, when he's older and will understand better, we must sit down and tell him that he has Collagen VI-related dystrophy, a rare form of Muscular Dystrophy, and that while walking is hard now, eventually it will be too hard.  I'm not sure how he'll take it. 

 

He's the happiest little boy.  I'm not going to tell him yet that breathing someday will become hard, and maybe eventually too hard; I'm just not ready.  I'm not going to admit that's our path, because we know there is science and technology that can lead to a cure for Wesley's disease, but we need your help.  

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Wesley's mom is a PhD cancer genomics researcher at MGH, Harvard Medical School, The Broad Institute of MIT and Harvard. 

 

She has already been in contact with the world experts in Collagen VI-related dystrophies and designed a scientific course that should theoretically target Wesley's genetic mutation resulting in a reversal of disease course. She has also been in contact with multiple world renowned scientific organizations who have begun designing proposals for treatments and models of Wesley's disease.  

The science is here, personalized medicine has become a beacon of hope in the scientific research community. Milasen, a drug designed for just one person was able to significantly slow progression of a child's neurological disorder.  Another neuromuscular disorder, spinal muscular atrophy, now has its first mRNA editing treatment, an RNA splicing modifier.  Additionally, the scientific research community has been transformed by the introduction of genetic engineering (Crispr/Prime Editing) technology, and a cure for Wesley is within reach.  I repeat, it is clearly within reach!  We just need to raise the funds to get things moving.  

All donations are tax deductible, pass through, and go directly to the science focused on treating and curing Collagen VI disorders. None of the donations are used for overhead, salaries, or anything of that sort.  All of COL6 Fund's costs are paid independently of any donations collected. The COL6 Fund is a registered non-profit in Massachusetts and with the IRS, and all donations are tax deductible and an appropriate receipt will be provided. 

 

Please be generous, and give as much as you can.  This is a special opportunity, we have a battle we can win, and with enough support we may see a certain little guy running around like all the other kids in a few years!   

Meet the Team

Board Members

Paula Mogan 

Cape Cod, MA

Kevin McGoff

Westport, MA

Kates Snyder Potempa

Nashville, TN

Kevin Vendituoli

Little Compton, RI

Scientific Board

Associate Board Member
Director of Outreach and Awareness

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Jillian Wise
PhD

Instructor in Investigation at Harvard Medical School - Massachusetts General Hospital

Cambridge, Massachusetts,

United States

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Louie Bottari

High School Senior

Winchester, Massachusetts,

United States

*COL6 Fund is a registered 501(c)(3) tax exempt charity.

Our registration / contact information is:

COLLAGEN 6 RESEARCH CHARITY INC

233 Old Harbor Rd., Westport MA 02790

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