Cooper Wood’s Fight Against Duchenne Muscular Dystrophy

Cooper’s family was devastated when two weeks after he turned six years old he was diagnosed with Duchenne Muscular Dystrophy. He was quickly referred to every specialist you can think of.

When it came time for a visit at the Duchenne Muscular Dystrophy clinic at Vanderbilt in Nashville, his parents found out there is ONE treatment that is available to him due to his specific mutation of the DMD gene. It’s called Elevidys, a one-time gene therapy infusion that is one of the most expensive medicines on the market. He completed and passed all of the tests that would make him medically eligible for treatment - then he was denied by insurance. After a hefty fight, many shares of his news article, a petition and the voices of thousands of people backing up Cooper - his case was sent an external review board where they overturned the denial and Cooper was granted an approval! He will be infused by the end of the year and we are so grateful for everyone who helped make this possible. We never could have done this alone.

The families next steps are staying in Nashville for 5 weeks and driving back to Nashville for weekly appointments the next 8 weeks after coming home. While Kaylin and Ryan might be mad at me for making this for them (not really), I know they will appreciate it because this is going to be an expensive next couple of months. Every donation will be put to a good use to help support Cooper and his parents on this journey.

Here are some links that can help explain what DMD is - 1. https://www.ncbi.nlm.nih.gov/books/NBK482346/

2. https://familyfriendsandduchenne.org/what-is-duchenne/?fbclid=IwZXh0bgNhZW0CMTEAAR1CaplNTyYd65MhU9Lj81wrmSCXBkI09noFv7aeL2pK70Rm-JiGvMzYTZ0_aem_BOfo_HGqGce2kxO25tLIwQ

Here is an explanation of Elevidys - https://www.parentprojectmd.org/drug-development-pipeline/elevidys-micro-dystrophin-gene-transfer/