

The Origin of Our Mission

Mackenzie's Story
In April of 2017, Mackenzie was diagnosed at the age of 23 with Amyloidosis. She had noticed a lump in the back of her throat that continually increased in size. After numerous visits with different ENT physicians, she had the lump biopsied, and the results indicated the tissue had characteristics of amyloid. She was referred to a hematologist in Boston that suggested she have a bone marrow biopsy to confirm the diagnosis. The results confirmed the suspicions, and Mackenzie went to see an Amyloidosis specialist at the Mayo Clinic in Rochester, MN which is recognized as a center of excellence for amyloidosis. He was completely baffled by her case, saying he’d never seen anything like her presentation. The “typical” amyloidosis patient is a 50 to 75-year-old male with multiple organs involved, whereas Mackenzie was a 23-year-old female with no organ involvement.
Mackenzie’s first trip to Mayo in May of 2017 involved a battery of tests to again confirm the diagnosis. Once it was confirmed a second time, the doctor recommended she undergo an Autologous Stem Cell Transplant in hopes of getting rid of the disease. He believed that due to her age, lack of organ involvement, and early diagnosis, the treatment would be successful.
Two months later, Mackenzie returned to the Mayo Clinic for her treatment. She spent a total of five weeks in Rochester undergoing treatment, with one of those weeks being spent in the hospital due to severe mucositis. Other than that, the treatment went incredibly smoothly. On her exit interview post-treatment (Day 18), the doctor informed her that she had achieved a complete response to therapy and was cleared to return home.
She went back to the Mayo Clinic for her Day 100 follow-up in October, 2017 and learned she was disease free. Her future monitoring will involve periodic blood tests to ensure the disease stays at bay. Today, Mackenzie continues to feel great!