We are heartbroken to share the news that Amanda Pickard, our beloved vice-president of the board of directors of the Spinal CSF Leak Foundation, died unexpectedly on Tuesday, January 24, 2023.
Amanda, who held a PhD in chemistry and worked as a research scientist, was a close friend, a colleague, and a vital part of our spinal CSF leak community. With her boundless empathy and characteristically pragmatic sense of humor, she shared her wealth of knowledge and personal experience with honesty, generosity, and optimism, even during her most challenging times.
Amanda’s spinal CSF leak story was complex, thorny with adjacent diagnoses and branching complications: adhesive arachnoiditis, hEDS, MCAS, POTS, a brain shunt. But no matter what point she was at in her own journey, Amanda was able to rally others with her fighting spirit. She shared advice and connected people to resources, she offered practical help and emotional understanding, she worked hard to assist other patients, and she was an encouraging, awe-inspiring role model for persistence in the face of adversity.
She posted Tik-Toks from her hospital bed, raising awareness about spinal CSF leak and educating others, even while facing some of her most intense struggles. She messaged with her fellow board members, keeping them apprised of her work, even as she was heading to doctor’s appointments herself. Her drive was indefatigable, in part because it gave her purpose and power in a situation where it’s easy to feel helpless and overwhelmed, but also because she believed the service work she was doing could help change the world of spinal CSF leak diagnosis and treatment.
And it did.
Our physician directory, which we unveiled last November, was Amanda’s project, the culmination of years of work to try and make the path to diagnosis and treatment easier for everyone. We are so grateful to her that she was able to bring it to fruition in what would turn out to be her final months.
A service will be held for Amanda on Tuesday, January 31, at St. Joseph’s, in Lancaster, PA. Our hearts are with Amanda’s extended family, who loved her fiercely as a daughter, a sister, a cousin, an aunt, a force of nature.
Amanda’s family has requested that in lieu of flowers or other gifts, people donate to the Spinal CSF Leak Foundation’s Amanda J. Pickard PhD Memorial Fund.
Appropriately, given her passion for research, advocacy, and education, contributions to the fund will support research to advance the understanding, diagnosis, and treatment of spinal CSF leak, as well as the Foundation’s continuing work in education and awareness that was so important to her.
We miss her terribly.