PATIENT AND CAREGIVER ADVISORY BOARD
Patient Caregiver Advisory Board (PCAB) is a group of highly engaged, trusted patients and caregivers who come together periodically to share their perspective and lived experience as we develop strategies to improve care and outcomes for individuals diagnosed with or experiencing chronic or recurrent acute pancreatitis.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
—Margaret Mead
Elizabeth (Liz) Jacobs is a clinical research professional living in the bay area with her husband Richard and dog Pippin. Following her PhD in organometallic chemistry (2014) she completed a post doc in chemotherapy drug discovery which catalyzed her interest in clinical research. In 2017 Liz was diagnosed with idiopathic exocrine pancreatic insufficiency and started PERT, which has helped her to live a relatively normal life. She transitioned to a role as a clinical research coordinator in a GI oncology department that allowed her to continue a career in clinical research and participate in patient advocacy. She currently works as a clinical researcher for a biotech company in the bay area. Her interests outside of work include running, rock climbing, backpacking and cooking. You can find her on Instagram at @achemistoncreon and @creoninthewild documenting her life with EPI.
Jane Schugel lives in Minnesota. Her daughter Ellie was diagnosed with chronic hereditary pancreatitis when she was 11 years old, and she had a total pancreatectomy with islet autotransplant when she was 12 years old. She has seen firsthand the toll this disease takes on a child and their family, and having support of others who have been through it is key, especially for a rare chronic condition such as pancreatitis. Given her experience, Jane is passionate about mentoring other pediatric pancreatitis families, especially since she lives in Minnesota where many families come to get care. She brings that experience and urgency to PCAB to help improve the care experience of other families.
Rohit is an experienced IT professional based in Chicago with an expertise in Supply Chain Planning. He is passionate about innovation & research in the areas of his professional domain and ailments which concerns him. He was diagnosed with chronic pancreatitis in 2013, about 15 years after his first pancreatitis episode. Based on the missed opportunities in his own journey, he has taken it upon himself to learn more about pancreatitis and help others like him to manage the condition. Rohit is excited to contribute to PCAB by not only bringing his own experience but also of others around him.
Andy is a retired biotech executive living in San Diego with his wife Ginny. He likes to spend time playing golf, scuba diving and visiting with his grandkids. Andy was diagnosed with pancreatitis more than three decades ago but the lack of a treatment plan led Andy to go across the country searching for treatment and undergoing different procedures. As he says, "I had a pretty quick diagnosis but what to do about it was a long time coming".
Andy is passionate about improving the care experience of others, including his son who also has a genetic variant associated with pancreatitis.
Andy is passionate about improving the care experience of others, including his son who also has a genetic variant associated with pancreatitis.