Eight individuals have been named 2018 End Well ePatient and eCaregiver Ambassadors. With a diverse range of experiences, these eight were selected based on their experiences, diversity of viewpoint, curiosity, creativity, and potential to continue making important contributions to our relationship with living and dying.
“Design thinking is all about keeping the ‘end user’ at the center of the conversation. So, of course, we feel very strongly that patients be engaged in this important dialogue,” said Shoshana Ungerleider, MD, End Well’s founder.
End Well is the premier convening of design, tech, health care, policy, patient advocacy, the arts, media and faith leaders with the goal of generating human-centered, interdisciplinary innovation for the end of life experience. Held on Dec. 6 in San Francisco, the single-day symposium’s fast-paced agenda of provocative minds and empathic priorities promises a unique immersion in the cultural, clinical and systems issues and opportunities relating to the end of life experience.
Meet our 2018 Ambassadors:
Aisha is a writer, caregiver, advocate, graduate student, and speaker based in Atlanta, Georgia. This storyteller is driven by faith, inspired by family, and eager to use her talents to affect positive social change. She is a full-time caregiver for her mother and founder of Our Turn 2 Care. Read Aisha’s story here.
Adam is a philosopher of science, a champion of humanities-informed practices in medical education and clinical care, and a person living with brain cancer (glioblastoma). He serves on multiple national advisory councils and committees focused on patient engagement Read Adam’s story here.
Jeremy is a medical student in the UC Berkeley — UCSF Joint Medical Program. From his experience living with a brain tumor, he advocates for the brain tumor and young adult cancer communities through writing, speaking, fundraising, and lobbying. He’s served on advisory committees including Dana Farber’s Young Adult Program. Read Jeremy’s story here.
Leilani is a four-time cardiac arrest and four-time open-heart surgery survivor, ECMO survivor, former ICD-owner, heart-transplant recipient, and current Pacemaker-user. She is also a healthcare UX consultant, techie, writer, and celebrated performer. Read Leilani’s story here.
After spending 36 years aimlessly searching for meaning, Molly, in 2016, found it with a brain cancer diagnosis. Molly is a cancer patient advocate, speaker, and writer. ‘Diagnosis isn’t the end, it’s the start.’ Read Molly’s story here.
Lisa became an unwilling member of the brain tumor community when her husband Patrick was diagnosed with glioblastoma. Lisa acted as his care partner and used her experience as an attorney to be the most effective advocate she could for his care. Since Patrick’s passing, Lisa has become a devoted advocate for the brain tumor community. Read Lisa’s story here.
Megan Mooney is an MSW, Research Specialist II at the University of Missouri, Department of Family and Community Medicine (ACCESS). She is the host of Death Cafe St. Joe and the social media Facebook lead and board member of Death Cafe. Megan is also the Facebook lead for Pallimed and works as a STAR Class facilitator at a local funeral home. Read Megan’s story here.
Maggie is a stage III cancer survivor and public health researcher. She uses her personal narrative to speak out about the harsh realities of survivorship, including late effects from cancer treatment. Maggie is dedicated to improving the quality of life for people living with serious illness and runs the Research Department CAPC in NYC.
End Well takes place on December 6, 2018 in San Francisco at the SF JAZZ Center. For more information on our foundation or for the 2018 program and registration, visit www.endwellproject.org.