Yesterday would have been Aurora’s birthday. She would have been 75 years old. Last year she passed away from pulmonary fibrosis as a result of Hermansky-Pudlak Syndrome. She’s one of the, if not the, oldest person on record with HPS type 1.
Aurora was never even diagnosed with HPS until she was already in her 70s. She’s what they call in medical research, an outlayer – someone who doesn’t meet the norms of a given population. We love those outlayers. We hope that as more people get screened for HPS, we’ll find more of them.
The HPS community owes Aurora a huge debt of gratitude. She traveled to the NIH to participate in the Pirfenidone trial and dutifully took her study medication to the last day of her life. Upon her death, she ensured that her body would be made available to the researchers at the NIH to continue to study HPS. She was worried about and cared for the younger generation of people with HPS and wanted to leave us the gift of a better life.
So, when her daughter, who is still very involved in the HPS community, posted to the listserv that her birthday had just passed, I felt it was something that should be remembered.
Aurora was a warrior in our battle to find better treatments and a cure. We salute her memory.