On Thursday, August 27th at 5:00 PM Pacific/8:00 PM Eastern, we will have a panel discussion exploring our panelists’ journeys! While “The Adrenaline Circuit” typically refers to the biology behind PPGL, this session explores a different kind of circuit — the connections that shape life after diagnosis and treatment. Treatment may remove the tumor and include lifelong surveillance, impacting the body, mind, relationships, and sense of the future. Panelists will share honest, lived experiences to normalize living with a disease that requires lifelong surveillance and care. Key Themes
- Recovery is a lifelong process, physical, emotional, and ongoing — not a “finish line” at treatment’s end
- Caregivers experience their own parallel journey of uncertainty and adjustment
- Life with PPGL often reshapes priorities, identity, and relationships
- Connection and shared experience are central to healing and hope
Register below:
Meet Our Panelists!
Sumi Bose, Moderator
Sumi Bose is a FinTech executive and leader in digital transformation by profession. She is also a Pheochromocytoma survivor, a devoted mother of two daughters, a loving wife, and a dedicated daughter. Her personal journey with this rare tumor—diagnosed in just 1 in a million people—has fueled her passion for raising awareness and supporting others facing similar challenges. She is honored to moderate this panel during Pheochromocytoma and Paraganglioma Awareness Week, bringing together experts and advocates to share knowledge, uplift the community, and inspire meaningful change.
Nejla Abbed
Nejla is a pharmaceutical industry professional with 30 years of experience who now works in patient advocacy for Parkinson's disease and headache disorder. She is the mother of three young adults, two of whom carry a genetic predisposition to paragangliomas and pheochromocytomas. Her son’s paraganglioma tumor was discovered at age 10 by age 17 he had severe symptoms as the tumor had destroyed a cranial nerve and he had 2 more tumors. The 3 tumors were surgically removed at age 17; he now has three newly identified tumors. Her daughter underwent pheochromocytoma removal at age 14 during COVID-19. She has been tumor free since but goes through yearly monitoring. Although the kids are working and in college, when we can, we love to travel, ski, and try to take down the oldest kid during every family game night (he always wins!).
Jennifer Manzo
Jennifer Manzo was diagnosed with bilateral pheochromocytomas in February 2020, after nearly a decade of symptoms. In late September 2020, she had surgery to remove both adrenals and now lives with adrenal insufficiency, which requires her to take steroids daily to stay alive. In addition to her pheochromocytoma diagnosis, Jennifer had neuroblastoma as an infant and a pancreatic neuroendocrine tumor also diagnosed in 2020. Despite the challenges, she lives a relatively normal life and works full-time as a higher education professional, travels often, stays fairly active, and just earned her master’s degree in professional writing. She began volunteering with the Pheo Para Alliance in 2021 as a way to give back while connecting with others impacted by pheochromocytoma and paraganglioma.
Siobhan Farley
Siobhan Farley lives in Vermont with her husband and two children and enjoys being outside skiing and biking when she’s feeling good. Siobhan has been a Rheumatology nurse for 21 years and loves what she does. She was diagnosed with a 5cm pheochromocytoma back in 2018 after suffering from an NSTEMI heart attack and several ischemic strokes. It took months for her pheo to be found. Siobhan is involved with the Pheo Para Alliance to help support other patients. She enjoys helping spread awareness about our rare neuro endocrine tumors and being part of this wonderful community.
Paul Stoughton
Paul is a Sound Designer working in video game development in the Seattle area. He was born in San Diego, California and grew up enjoying the beach and playing music in bands with his friends. After high school, he left San Diego to attend a digital arts college in the SF Bay Area, launching his career in interactive audio design. He loves music, recording sounds, long walks with his 1 year old golden retriever named Ramen and spending time with his wife Nikki.
He was first diagnosed with Paraganglioma at age 16, resulting in a long abdominal surgery to remove two tumors. It wasn’t until 14 years later that the disease returned, sending him through another round of surgeries to remove recurrent and metastatic disease. He’s currently eight years past this milestone and grateful for every tumor free year since. His priority now is enjoying a balanced life, enjoying the moment, and helping others navigate this disease.
