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…
Columns
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…
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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…
HATTR-PN
ColumnsI Learned the True Value of Friendship Amid Difficult Times
“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when…
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