COL6 Fund

COL6 Fund Raising money to cure Collagen VI-related dystrophy, a rare congenital muscular dystrophy. At this time there are no treatments. Sharon MA 02067

Welcome to the COL6 Fund

Collagen VI-related dystrophy is a rare and understudied genetic issue that presents itself as a congenital muscular dystrophy. It results from a change in the Collagen VI gene producing bent collagen fibers and the decreased ability of muscle cells to be held together properly and thus not work or develop properly. The underdeveloped matrix surrounding the muscle is pre

sented across all skeletal muscles in the body, although weakness is predominately in the hips and shoulders. Eventually, patients with Collagen VI-related dystrophy lose the ability to walk, which brings a myriad of health problems and bone density issues. Additionally, the diaphragm is also a skeletal muscle along with the muscle connecting the lungs to the rib cage, and the majority of Collagen VI-related dystrophy patients require breathing assistance. That being said, with the progression of genetic research, RNA modulating science, and treatments related thereto, we are in an exciting time, where issues that were formerly unsolvable, are already curing patients. COL6 Fund was founded in 2020 because there are only a handful of researchers, thousands of children and still no treatments. The technology and science are here, but the funds to direct research are not. We just need your help raising the finances to support these therapeutic developments.

*COL6 Fund is a registered 503(c) tax exempt charity. Our registration / contact information is:

COLLAGEN 6 RESEARCH CHARITY INC
11 Gannett Ter.

MORE RESEARCH 🔬💙.Only 5% of rare diseases have an approved treatment. Let’s change that.Donate to help us find answers ...
02/28/2026

MORE RESEARCH 🔬💙.
Only 5% of rare diseases have an approved treatment. Let’s change that.
Donate to help us find answers

Today on Rare Disease Day, we honor the strength and resilience of our families, but we also call for action. We need ac...
02/28/2026

Today on Rare Disease Day, we honor the strength and resilience of our families, but we also call for action. We need accelerated research, faster diagnosis, and equitable access to care.
Together, we are rare, but we are not alone. 💙🦓

300 million people worldwide live with a rare disease. Alone we are rare, but together we are a powerful community. This...
02/26/2026

300 million people worldwide live with a rare disease. Alone we are rare, but together we are a powerful community. This , we must recognize that “rare” doesn’t mean invisible—we should have universal access to care, treatment, and accessibility in every space. Let’s make the world accessible for all!

If you have the chance please keep sharing our Giving Tuesday Goals! More followers means more awareness of this rare di...
12/03/2025

If you have the chance please keep sharing our Giving Tuesday Goals! More followers means more awareness of this rare disease affecting thousands in the USA.

As giving season kicks off, consider giving back in more ways than one. We're often seeking volunteers to help with even...
12/02/2025

As giving season kicks off, consider giving back in more ways than one. We're often seeking volunteers to help with events and social media to raise awareness and drive donations for Collagen VI related muscular dystrophy research. Join the movement and help us find a cure!

We're still reflecting on our unforgettable Reception this month and want to express how thankful COL6FUND is for our in...
11/28/2025

We're still reflecting on our unforgettable Reception this month and want to express how thankful COL6FUND is for our incredible community. Thanks to our family, friends, and supporters for fighting rare diseases with us.

We invite you, your friends, and family will join us for a special reception at the historic New Bedford Whaling Museum ...
09/21/2025

We invite you, your friends, and family will join us for a special reception at the historic New Bedford Whaling Museum in the Bourne Building, home of the legendary whaling ship Lagoda. To purchase tickets see link in bio.

🧬We were thrilled to hear exciting updates from one of our funded physician investigators, Dr.Foley from the NIH, on bio...
08/06/2025

🧬We were thrilled to hear exciting updates from one of our funded physician investigators, Dr.Foley from the NIH, on biomarker development for future clinical trials! Huge thanks to the organizers for hosting an inspiring scientific conference . Grateful to be part of a community pushing progress forward on collagenvi-related muscular dystrophy.

Our Scientific Director, Dr. Jillian Wise, was able to attend a broader congenital muscular dystrophy, , science con...
08/05/2025

Our Scientific Director, Dr. Jillian Wise, was able to attend a broader congenital muscular dystrophy, , science conference in Philadelphia this week. We look forward to hear all about the exciting ongoing research and updates on some of our co-funded science!

06/06/2025
Rare diseases may be uncommon, but science, research, advocacy and hope can unite us! Let’s push for better treatments a...
02/28/2025

Rare diseases may be uncommon, but science, research, advocacy and hope can unite us! Let’s push for better treatments and understanding…together our voices are more powerful. Wear your stripes and stand with rare!

Our son’s muscular dystrophy does not stop him despite the world and his favorite activities not being designed for him. Together we can make a world that is meant for all. He is rare but not alone! Support us today through raising awareness or donating.

Childhood is when many rare diseases first appear, shaping our children’s lives as they just begin. Let’s raise awarenes...
02/27/2025

Childhood is when many rare diseases first appear, shaping our children’s lives as they just begin. Let’s raise awareness and stand with the rare disease community.

Address

233 Old Harbor Road
Westport, MA
02790

Telephone

+16179435959

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