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Amyloidosis Fundraiser at Mill Creek Brewing Co!
May 18, 2017 @ 6:00 pm - 9:00 pm
Join us for a fundraiser benefitting the Amyloidosis Foundation. $1 from every pint will be donated to the foundation alongside the proceeds from a silent auction.
We were approached to host this event by members of our own Nolensville community, Beth and Patrick ( a member of the Nashville Rugby Football Club), who have close ties to the foundation. Please come out and join us to raise awareness and funding for the Amyloidosis Foundation! You can read about their story below.
In the winter of 2016, Patrick was training for the Rock N Roll half marathon in Nashville when he started experiencing chest pain while running. After visits to multiple doctors and a multitude of tests he was told in early June that an MRI indicated amyloidosis. Ultimately, he was sent to Mayo Clinic in Rochester, Minnesota. We went to the Mayo Clinic in June. The week consisted of roughly 30 appointments, over 20 needle pokes, and four biopsies. The culmination of this visit was a diagnosis of cardiac AL amyloidosis, stage 2.
AL Amyloidosis is caused by a bone marrow disorder. In short, proteins in the body (known as light chains) are misfolded and become amyloid. These misfolded amyloid proteins adhere to various organs around the body causing gradual damage and impacting the organ’s function. In Patrick’s case, the amyloid attached to his heart, causing his heart wall to thicken to twice it’s normal size and putting him into congestive heart failure. Amyloidosis is incredibly rare; it affects only a few thousand people in the U.S. each year, and most of them are over 65. The odds of getting this disease before turning 30 are roughly 1 in 150 million.
Patrick began a chemotherapy regime in early July and also started a clinical trial through Mayo Clinic. We were expecting our second daughter, due in December, and hoped he would be done with chemo before her birth, although the doctors did not think it would be likely.
After three months on the chemo regime, Patrick was officially in remission. Chemo continued until late November when he was taken off of chemo due to worsening side effects. Clara, our daughter, was born not even two weeks later. It was perfect timing.
Patrick is not cured, and he hasn’t beat this disease, but he has certainly knocked it out for the time being. His cardiac numbers are back within a normal range thanks to the clinical trial, and he is still in remission. He is feeling good, and we want to celebrate by raising money for the Amyloidosis Foundation.
The Amyloidosis Foundation supports patients and families while promoting research, education, and awareness.