I had lunch today with Michelle Davis, who is the Executive Director of the IFOPA. She is just an amazing person and has led the IFOPA from a grassroots family led organization to one the that has staff and an ongoing mission to find a cure for FOP.
The IFOPA supports multiple drug trials through out the world. Hayden participated in one of the first drugs trials that ended up being passed by the FDA. It was such an exciting moment. Hayden and I had long conversations about what it would be like to be able to have a surgery to remove all of the bone in his body and replace it with graphed muscle. He told me he really wanted to do this but wanted to wait until he finished with college.
Yesterday marked another mile stone in research. Regeneron announced that its Optima drug trial with Garetosmab prevents greater than 99% of abnormal bone formation. Its so exciting now to have yet another option.
The IFOPA is supporting 8 active drug trails which are looking at different ways to target/stop the extra FOP bone from growing.
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