Patient Stories
Mar 14, 2024
Having a genetic disease is one of life’s greatest calamities. I say this from my own experience, having been married for almost 27 years to someone who was…
Mar 13, 2024
– Family Health History Road Trip Program Aims to Inspire Conversations About Health History and Empower Families to Take Control of Their Health ––…
Feb 29, 2024
My hATTR story began in the mid-1960’s when my father, a healthy, strong, outdoorsy guy in his late 40’s started tripping, experiencing numbness, and having dizzy…
Feb 17, 2024
It has recently become well-established that there is a connection between Alzheimer’s disease pathology and gut microbiome dysbiosis. We have previously…
Feb 13, 2024
In the last 2 years, there have been 3 successful trials of antiamyloid antibodies in Alzheimer disease (AD): aducanemab, now controversially US Food and Drug…
A recent study looked at available research on the needs of caregivers who look after someone with a rare disease. The journal article identified seven areas that…
I am grateful beyond measure!It was Memorial Day weekend 2023 and our annual family vacation in Myrtle Beach, SC. The perfect time to hit the beach, play in the…
Storytelling is a powerful tool that continuously drives knowledge development and sharing about the patient experience with managing hereditary diseases and…
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- Family Health History Road Trip…
I was diagnosed as a child with a disease called bronchiectasis. This chronic disease eventually caused my AA amyloidosis which affected my kidneys and eventually…