Day 321: Tried To Get The FDA To Approve A Drug

Martin McGarry in his boxing days

One of my favorite random acts this year was way back on Day 33 when I took Army Staff Sergeant John La Giglia and his family to a Northwestern basketball game.   Lindsey and I had a great time with them, and I have been in contact with the La Giglia's on and off this year.  Recently, Mel (John's wife), reached out to me with a suggestion for a random act of kindness for a neighborhood friend of theirs.  In February of this year, the father of their friend, Martin McGarry, was diagnosed with an extremely rare and fatal disease called Familial Amyloidosis.  Familial Amyloidosis, which has already taken the life of Martin's mother and two brothers, is a hereditary disease which causes the liver to create misfolded protiens and leads to pain, lack of mobility, heart deterioration, and impairment of the nervous system.  As of now, there is only one drug, Tafamidis, available that slows down the progression of the disease, but it isn't available here in the United States due to a lack of FDA approval.  For the family to get the drug, they would have to go through overseas manufacturers which is quite expensive and not covered by insurance companies.  The drug is currently in the process of being approved by the FDA, but for Martin and many others, time is of the essence.  Martin's family has put together a petition at Change.org to try to get the FDA to speed up the approval process.  So today, for my random act of kindness, I tried to get the FDA to approve a drug by signing a petition on behalf of the McGarry family.  The petition only needs less than 90 signatures, so if you have a couple of seconds, please go to this link and sign the petition.