Late last week, to drive disease awareness, I took to the streets in downtown Auckland, New Zealand, and asked random people if they had heard…
Columns
HATTR-PN
ColumnsFinding Silver Linings in Life, Even After Suffering a Loss
It’s been over four months since I lost my husband, Aubrey, to hereditary ATTR amyloidosis. The vacuum he’s left behind in the lives…
HATTR-PN
ColumnsWhy Advocacy Is Important for New Zealanders With Rare Diseases
Life is full of twists and turns. I was a caregiver for nine years until this past May, when my husband passed away from…
HATTR-PN
ColumnsHow the Pharmaceutical Industry Can Help Patient Advocates
I recently attended an amyloidosis scientific conference in Heidelberg, Germany, that was a productive and empowering experience. As a former caregiver to a spouse…
HATTR-PN
ColumnsAllowing Time to Let Go After the Loss of a Husband
Two weeks after the passing of my husband, Aubrey, my four children decided that the company of a new puppy…
HATTR-PN
ColumnsCollaboration Between Patient Advocates and the Scientific Community Brings Me Hope
By the time this column is published, I will be halfway across the world, traveling to Heidelberg, Germany, for the International Symposium on Amyloidosis.
In my columns, I share my experience as a caregiver to a spouse who suffered from hereditary ATTR amyloidosis. Whenever I sit down…
HATTR-PN
ColumnsLiving in the Present Can Help Us Better Manage the Future
After I finish writing this column, I will meet a few friends for dinner. But socializing without my husband beside me still feels foreign.
HATTR-PN
ColumnsEarly Diagnosis, Treatment Access, and Self-advocacy Are the Pillars of Hope With ATTR Amyloidosis
It has been very encouraging to witness treatment advancements that target ATTR amyloidosis. Although a cure is not currently available, pharmaceutical research shows promise…
HATTR-PN
ColumnsLike David Attenborough, I Want to Use My Voice to Make a Difference
I recently watched a documentary narrated by British naturalist David Attenborough about how climate change and deforestation negatively affect animal life on our…
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