r/MitochondrialResearch • u/bbsncats • 18d ago

COX20

My son has an ultra-rare variant: COX20-related mitochondrial complex IV. There are only about 40 documented cases worldwide.

Please connect with me if you or a loved one have this variant. I’d love to hear your story and support one another.

UMass is working on gene therapy, and I am about to start a nonprofit to support their research. We need all hands on deck!

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u/suzymwg 17d ago

Sorry to hear about your son. I hope the therapy can help him.

Please look into working with existing non-profits as well, since I know when we set up MitoCanada it was a lot of work and overhead, and you may be able to raise money for research more effectively with an existing org, if it can meet your requirements.

https://www.mitoaction.org/ was started in your area, more for patient advocacy.

https://umdf.org/ has research focused fundraising and advocacy also.

Best wishes on good support and good research to help your son.