Leading an association that supports and advocates for rare disease patients while being a caregiver to one certainly has shaped my outlook on life. To a larger extent, these roles have allowed me to find my calling within the campaign space, where I’m pushing for positive changes to the present…
One of my greatest accomplishments in life is being a mother to four amazing individuals. I cannot give enough credit to my kids for handling all of the challenges that come with having a father stricken with hereditary amyloidosis. When my husband, Aubrey, was diagnosed in 2013, breaking…
Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it was a good read, as it reinforced the importance of staying well to be able to care for a spouse who is afflicted with…
A few days ago, I had the honor of presenting at this year’s Patients as Partners Europe virtual conference, an industry forum centered on exchanging ideas about how to more readily provide therapeutics to patients. A vast majority of attendees were from the pharmaceutical industry, clinical research organizations, and…
Earlier today, I had the privilege of listening to a fellow carer share the mental, emotional, and physical trials she experienced while supporting her late husband, who was afflicted with hereditary amyloidosis — the same condition my husband, Aubrey, has. I couldn’t help but get choked up…
It is a summer morning here in New Zealand. As I write this, a cool, gentle breeze blows through the house, and I am being serenaded by a symphony of native backyard birds. In moments like this, I am flooded with gratitude and peace. I bask in the knowledge that…
Sleep is an essential part of life that comes so naturally, from the moment we come into being. Yet sometimes we forget the impact that too much or too little sleep can have on our lives. I say “naturally,” but the truth is that falling asleep comes more easily for…
I can hear the shower going upstairs as I sit at my writing desk in my downstairs office. It is funny how the sound of running water always makes me feel a little melancholic and contemplative. At the moment, I am dwelling on a question someone posed to me after…
2020 is almost at an end. In a few weeks, we will celebrate the holiday season, and before we know it, 2021 will be upon us. The past year was mostly filled with bad news and unexpected events, and the turmoil caused by COVID-19 has impacted many people around the…
“Surprise!” I watched familiar faces filter into the room where I stood stunned, not expecting the birthday event that was unfolding before me. I turn 50 tomorrow, and some close friends went to the trouble of organizing a celebration for me. I was thankful for the moment, and I felt…
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