Scott’s symptoms began in adolescence with high cholesterol and eruptive xanthomas, but his first pancreatitis attack at 30 launched a decade of medical crisis. His triglycerides once reached 24,000 mg/dL during hospitalization. For nearly a year, Scott found himself in the ICU for two weeks every eight weeks—missing work, watching his three young sons wake to find their father gone again. Doctors repeatedly accused him of alcoholism, creating deep shame around symptoms that weren’t his fault.

Through relentless self-advocacy and online research, Scott discovered FCS by searching “recurring pancreatitis attacks” and “why is my blood milky?” This led him to Action FCS and ultimately to his diagnosis. The relief of finally having a name for his condition was profound. “I could no longer get upset at myself when a flare happened—there was a reason,” he reflects. Meeting a 75-year-old with FCS at his first patient conference transformed his outlook, proving a long life was possible.

Now Scott focuses on helping others avoid his painful journey. His advice: “Find a mentor who can guide you through this process. Form a medical team that collaborates on your care. Switch to an extremely low-fat diet—it starts with good nutrition. Show yourself grace during frustrating moments, but get back on the horse. You’re stronger than you think.”

Julie’s health journey began at 18 when blood labs showed triglycerides over 1,000 mg/dL, though no connection to FCS was made. Her first acute pancreatitis attack at 20 left her unconscious for much of her hospital stay. After having her son at 28, monthly pancreatitis flares returned with devastating regularity—her triglycerides escalating from 2,000 to over 10,000 mg/dL. She spent 7-10 days hospitalized every month for two years, missing precious time with her infant son and husband.

Desperate for answers, Julie underwent numerous surgeries over seven years, including a radical hysterectomy at 34 that ended her dreams of a larger family. The breakthrough came during a plasmapheresis procedure when a practitioner noticed chylomicrons in her blood. This observation led her to research FCS online and bring her findings to her lipidologist, finally receiving her diagnosis in Fall 2017—three months after learning about chylomicrons.

Today, Julie channels her 25-year medical odyssey into helping others avoid similar suffering. “Give yourself grace,” she advises newly diagnosed patients. “Find your support system—family, friends, online communities. You are not alone. This disease does not define you. You can still have dreams and goals. Make plans, be flexible with adjustments, but don’t stop dreaming.”

Melissa is the co-founder and co-president of the FCS Foundation, which works to establish a global support network and promote advocacy and education for patients and caregivers living with Familial Chylomicronemia Syndrome (FCS). Her dedication to this mission is deeply personal—her daughter, Giuliana, was diagnosed with FCS in 2013 at just seven weeks old. 

Melissa lives outside Albany, New York, with her three children. When she’s not advocating for the FCS community, she works as a Licensed Mental Health Counselor and recently began a new role at Albany Medical Center supporting families impacted by pediatric oncology. In her free time, Melissa enjoys being outdoors with her family, her crazy black lab, and binge-watching Netflix.

Jenny is the executive director of The National Pancreas Foundation and brings more than 20 years of leadership experience in health nonprofits, with a focus on advancing care, research, and support for individuals and families facing complex diseases. Jenny works closely with patients, medical professionals, and researchers to strengthen programs, expand services, and improve access to patient-centered care. She is passionate about building meaningful connections within the pancreatic disease community and advancing the National Pancreas Foundation’s mission to provide hope for those affected by pancreatitis and pancreatic cancer through education, support, and research. 

She has held leadership roles with organizations including the Cystic Fibrosis Foundation, March of Dimes, and ALSAC/St. Jude Children’s Research Hospital. Jenny and her family reside outside St. Louis, Missouri. She is a wife and the proud mother of twin 12-year-old boys and 120 lb. Great Pyrenees-mix lapdog. 

Brandi’s health journey began at 23, when she started searching for answers to unexplained health issues and dangerously high triglycerides. After years without clarity, she was finally diagnosed at age 42, after a  hospitalization for acute pancreatitis, when an ICU physician referred her to a lipid specialist. Receiving a diagnosis brought a sense of relief—it gave her an explanation for years of pain and uncertainty. 

Today, Brandi’s focus is not only on managing life with this rare condition, but also on equipping her daughter with the education and resources needed to navigate a future with similarly high triglycerides. Reflecting on her defining moment, Brandi shares:  

“Lying in a hospital bed in immense pain, being called a degenerate and an alcoholic—it’s not the kind of care you want when you’re suffering like that. To then learn you have this rare, genetic, hereditary disease, and still not receive understanding from medical professionals for so long…” 

This experience is what drives Brandi to advocate for others and to contribute her voice to the FCS Lived Experience Council. 

Alex is the Director of Patient Advocacy at Arrowhead Pharmaceuticals, with over a decade of experience in patient advocacy. She is a passionate advocate for patients and caregivers, working to ensure patient voices are heard and respected at every step of their care.

Through close work with the FCS community and individuals affected by recurrent pancreatitis due to high triglycerides, Alex has seen firsthand how challenging getting a diagnosis and daily disease management can be. These experiences shape her commitment to improving awareness and creating meaningful educational resources that help patients, families, and healthcare providers better understand FCS.

Alex focuses on listening to patients and caregivers, supporting education and engagement within the FCS community, and advancing efforts that bring hope for better care, fewer barriers, and a more supported future for patients and families. She lives in Long Beach, California, where she is a wife and mom—roles that continue to shape her perspective and deepen her commitment to the families she serves.