Transthyretin Amyloidosis, or ATTR, is considered a single disease, however the diversity in its clinical presentation is staggering. In this blog, we’ll discuss some of the most common hereditary variants and how the disease manifestation differs around the world in documented hotspots.
Welcome to Mackenzie's Mission
Making a difference in the fight against amyloidosis
My Story by Mackenzie Boedicker
My New Life Fighting Amyloidosis
In April of 2017, I was diagnosed with AL Amyloidosis, a rare and deadly bone marrow disorder that causes a buildup of abnormal protein in vital organs, eventually leading to organ failure. I successfully underwent treatment at the Mayo Clinic, and thanks in large part to my early diagnosis, I achieved a complete response. I remain on a regimen that keeps my disease under control, and I continue to feel great.
This past year I devoted my time largely to Mackenzie’s Mission and the work of the Amyloidosis Speakers Bureau. Outside of the foundation, I continued my travels, having spent time in the Arctic in search of polar bears, as well as exploring the beautiful country of Turkey. I am now working towards my Master’s Degree in Physician Assistant studies at my alma mater, Northeastern University, with the anticipation of graduating in the Fall of 2024!
Importantly, as a result of my experience and my desire to give back, I founded Mackenzie’s Mission to make a difference in the fight against Amyloidosis. I invite you to sign up and follow my journey and the great work we do at Mackenzie’s Mission.
This past year was more of the same, but hitting a big milestone! With the help of so many, we continued to advance our dual mission of raising awareness and supporting research. Since we began …. For our raising awareness initiative – the Amyloidosis Speakers Bureau – we are SUPER PROUD to say we’ve given over 215 presentations to MORE THAN 10,000 medical students and residents!! For our supporting research initiative, we’ve given over $830,000!! Looking ahead, it’s all about continuing to do more of the same great work. We can’t do it without your support, passion, and shared determination to make a difference in the fight against amyloidosis. Thank you!
Per the National Institute of Health, “One of the most promising areas of research in recent years has been gene editing, including CRISPR/Cas9, for fixing misspellings in genes to treat or even cure many conditions.” In this piece we provide a clinical trial update for transthyretin (TTR) amyloidosis using this technology.