Honoring those who give the gift of life

Organ donors are ordinary people who make an extraordinary impact. Each day I’m personally reminded of how one decision can change a life. My life was saved because of my donor, who made my double-lung transplant possible five years ago. Each breath I take reminds me of the…

Art as a Means for Survival: A Visit to the Museum

It’s Friday, and after a long morning of stressful clinic calls that included coordinating appointments, negotiating a telehealth option amid the ongoing COVID-19 pandemic, and asking for and hoping a prior authorization drops on my Trikafta (elexacaftor, tezacaftor, and ivacaftor) before I need the refill, I decide I deserve a…

A Conversation With Rare Disease Advocates

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