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.

Excited to announce our next grant funding for fibroblast therapy targeting! We are excited to fund some work that will ...
07/22/2026

Excited to announce our next grant funding for fibroblast therapy targeting! We are excited to fund some work that will advance this critical need!

07/11/2026

To every runner who showed up, pushed through, and crossed the finish line….thank you! 🏅✨ We are in awe of the grit, sweat, and smiles you brought today. We couldn’t ask for a more dedicated, inspiring crew. Let’s keep moving a cure for collagen vi forward! 🏃💨💙

Join us July 17 at Regatta Place, 5 Marina Plaza, Newport, Rhode Island for drinks, dancing and yacht rock vibes. All in...
07/05/2026

Join us July 17 at Regatta Place, 5 Marina Plaza, Newport, Rhode Island for drinks, dancing and yacht rock vibes. All in support of finding a cure for collagen vi- related muscular dystrophy.

Join us on July 17 for a fun day of music, food, and purpose! We are coming together to celebrate and learn about the am...
06/30/2026

Join us on July 17 for a fun day of music, food, and purpose! We are coming together to celebrate and learn about the amazing science and progress happening at the COL6 Fund. Come enjoy great company while supporting vital research for a cure .

Did you catch our amazing board member, Caroline LeMay, updating the community on their life experience at Worldcol6day?...
06/25/2026

Did you catch our amazing board member, Caroline LeMay, updating the community on their life experience at Worldcol6day? 🌟 We are so lucky to have her voice guiding our mission. If you missed her inspiring words, she gave a glimpse into life with col6 and the amazing academic and life accomplishments she has made thus far. We can’t wait to witness her future achievement’s! Speaking of community, we are getting SO excited for our upcoming events this summer! ☀️ Get ready for sunny days, great causes, and making a real difference together. Check out the pickleball tourney this weekend Acoaxet Club and our annual summer party Regatta Place. For more details check out our website.

Kids’ tickets are almost gone! We only have 8 children’s tickets remaining for our July 17th Summer Party at Regatta Pla...
06/15/2026

Kids’ tickets are almost gone! We only have 8 children’s tickets remaining for our July 17th Summer Party at Regatta Place.
Bring the whole family for an unforgettable evening while supporting research to find a cure for collagen-vi related muscular dystrophy. Don’t wait if you’re planning to join us!
💙Reserve tickets now
☀️😎

Join col6fund and additional worldwide organizations in the 2nd world col6 myopathy day on June 6th. There will be a pub...
05/27/2026

Join col6fund and additional worldwide organizations in the 2nd world col6 myopathy day on June 6th. There will be a public zoom to learn more about research and awareness efforts across the globe. And excitingly, featured in this post, bringing awareness to a subtype of collagen vi-related myopathies, is one of our scientific board members Dr Fulvio D’Angelo!

Come join us in Newport on July 17th for a huge summer party to support our work creating a cure for Col6MD! To all our...
05/27/2026

Come join us in Newport on July 17th for a huge summer party to support our work creating a cure for Col6MD! To all our supporters, this is a great opportunity to bring friends or colleagues who may find interest in our mission, and bring them onto the Col6Fund team. Visit the event page here:

Enjoy a Newport Evening for a cure for Col6 Muscular Dystrophy!

Come join the Col6Fund crew at Regatta Place in Newport on July 17th, 2026 for a Yacht Rock Themed fundraising party. V...
05/11/2026

Come join the Col6Fund crew at Regatta Place in Newport on July 17th, 2026 for a Yacht Rock Themed fundraising party. Visit the event page here for tickets:

Enjoy a Newport Evening for a cure for Col6 Muscular Dystrophy!

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

Address

233 Old Harbor Road
Westport, MA
02790

Telephone

+16179435959

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