Hi everyone, my name is Paris Adams and I’m a patient advocate for the FibroFighters foundation. I was diagnosed with Fibrolamellar in January of 2022 and I’m actively fighting it to this day. As a patient, I hope to help other patients find the very best care and have access to as many resources possible to make informed decisions about their treatment and beat this cancer. I hope to connect with many of you. Cheers.

Danielle Duran Baron was born in Rio de Janeiro, Brazil. She lives in Maryland with her husband, Blake, their two sons, Joaquim and Gabriel, and their cat, Luna. Danielle believes in miracles and in the healing powers of storytelling and human connection.

At the age of 28, she was diagnosed with fibrolamellar hepatocellular cancer, an experience thataffected her deeply. Five years later, she dealt with a recurrence and has been cancer–free ever since. Asa two–time fibro survivor, Danielle has used her experience to raise awareness about the disease and toadvocate for patients in different parts ofthe world.

Danielle is the Vice President for Marketing Communication and Industry Relations at the School Nutrition Association. She holds a master’s degree in journalism, an MBA in marketing and is fluent in Spanish and Portuguese. Danielle is a certified association executive (CAE) and an active member of the American Society of Association Executives (ASAE), where is the immediate past chair of theGovernment Relations and Advocacy Professionals Advisory Council. She is also the President of the Board of Luminus, a Maryland–nonprofit helping immigrants thrive in their communities. When notworking or volunteering, Danielle can be found at her sons’ soccer games, where she is the loudest parent on the sidelines.

Laura is a Maryland-native who believes in the power of community engagement and education. She spent two years teaching English in Taiwan before moving back to the States where she currently works for a small elementary education programming start-up.

Laura was diagnosed with fibrolamellar in 2019 at the age 25. She is currently receiving immunochemotherapy treatment. Laura is thrilled to be a part of the FibroFighters team as a Patient Advocate. She hopes to foster a strong patient community and empower all fighters to advocate for themselves.

In her free time she enjoys traveling, trying new foods, and reality shows.

Hi, My name is Terra. I am 52 years young, a wife and mother of two beautiful girls. I was diagnosed with Fibrolamellar in July2001 and have been Fighting, Surviving, and Thriving with this rare cancer for the past 21 years and counting. Living with this disease has been challenging to say the least however it has shown me a perspective on life I feel blessed to have. I see beauty in the everyday and live with a heart full of gratitude. Through my roller coaster journey of ups and downs I have learned numerous skills that were necessary in dealing with my care and treatment. I understand, far too well, how absolutely vital it is to be your own advocate and learned that saving my own life was now my full–time job. Through all my surgeries, treatments, clinical trials and more it ultimately led me to a lifesaving living donor liver transplant. One that I was told was impossible.

I believe that my purpose is to share my experience with others to provide HOPE against what seems to be unbeatable odds. With an undeniable anchor of support from family and this amazing Fibro Fighters team I am still Fighting and Thriving with Fibrolamellar.

Jansher is 20 years old currently living in New York. He was diagnosed at age 19 with Fibrolamellar.  Jansher was born in England London and moved to New York five years ago. His passion in life has been football, (equivalent to our game of soccer) and food. Jansher loves to watch different cooking shows and try to recreate the recipes at home.  He is a diehard fan of the Arsenal football club in London.  

Jansher has a wicked sense of humor and strong mental fortitude. Jansher recently had a Whipple procedure and liver resection performed simultaneously. Even in the ICU when he was semi-conscious, he had football on and he kept score. 

Jansher dreams to attend college one day. He wants to live his life to the fullest and hopefully defeat fibrolamellar. Never at any point during this journey, has Jansher ever feel that he may lose this battle, he has always known that he will do everything he can to build his strength and to one day, overcome this disease.

Jansher wishes to help others by and creating fibrolamellar awareness and give hope to others who may need encouragement and support. Jansher is looking forward to helping others as a patient advocate for FibroFighters and possesses natural charisma and confidence about himself, along with a contagious smile and attitude wining the hearts of many.  

 My name is Ethan Neumann, and I was diagnosed with FLC in January of 2021. I currently live in Dallas, TX and work at UTSW Medical Center. Everything that I do is dedicated to beating FLC. I work as a Research Technician studying IDH1–mutant glioblastoma as I prepare to apply to PhD programs to study FLC. I’m a runner at heart, but I also love to go the gym, cook, go to EDM concerts, and spend time with loved ones.

My name is Corey Robison. I am 27 years old, and a I am a two–year FibroFighter. By trade I am a service industry worker, though my real passion in life is music. I’ve played drums in a number of bands throughout my life, and it has continued to provide me with a sense of hope and purpose through my experience as a cancer patient.

In my role as a Patient Advocate with the FibroFighters Foundation, my goal is to educate and empower both patients and their families about Fibrolamellar carcinoma and the nuances of the world around it. Since my diagnosis, I have spent countless hours researching and speaking with those knowledgeable about this disease. I’ve built a large network in doing so, and I am happy to share as much as possible with my fellow fighters.

“In my cancer journey, instead of saying Why Me I said try Try Me.”

Hi, there my name is Amanda, my spouse, Paris, is a Fibrofighter and has been fighting the good fight since January 11, 2022. I’m excited to be apart of FibroFighters and to help support other caregivers.

Emily has been advocating for her son Rudy since his diagnosis at age 12, 2 1/2 years ago.  Emily is a choral conductor, music teacher, and vocalist, and her favorite place ever is the woods. 

Joy’s repertoire is one of inspiration, advocacy and relentless love. She served as an advocate and liaison for those maneuvering through bureaucratic systems, through programs providing umbrella services for at risk families.

Joy is a business owner and holds certificates as a Forest Bathing Guide, Mediation Teacher, and Registered Yoga Teacher. She holds a bachelor’s degree in psychology, and presently  is a graduate student in Depth Psychology. Once obtaining licensure as an LPCC, her goal is to incorporate various modalities including rewilding to change the course of therapeutic outcomes.

 Presently, she is on the frontlines fighting cancer as an advocate for her daughter, Lacey, an FLC Fighter since 2015.  Joy came on board as the Lead Patient Navigator for FibroFighters Foundation in 2019.

“Advocating for my daughter, and creating the waves necessary for patient centered care is an act of revolutionary love”.

Extensive Retail Management background for over 40 years until our son was diagnosed with Fibrolamellar.  During the past 8 years I became a full-time student learning everything I could about Fibrolamellar to try to help our son Robert and now leveraging that knowledge to help as many Fibrolamellar patients and families as possible.  In late 2019 founded FibroFighters Foundation and became Executive Director after completing the 501c3 process on May 29th of 2020.  In this role I utilize my extensive management of people and resources to oversee all day-to-day operations performed by our FibroFighters team.  

I am most proud of being a mother of three wonderful children, and four beautiful grandchildren!  Married to Tom for 41 years.  My professional background is in accounting and the banking industry spanning over the last 40 years.  Mitsubishi Bank, San Diego Trust, and Savings, Thermo Fisher Scientific and currently ViaSat.

Dr. Kent has been a Pediatric Hematologist and Oncologist for 25 years, including 18 years at Rush as the Director for Physicianship, Role Leader for Advocacy, Creator of the Social Justice and Health Equity Leadership Track, and Founder of the Rush Fibrolamellar Carcinoma Program. Dr. Kent was educated at Harvard (BS), Mayo Clinic (MD), University of Chicago (Pediatrics) and then Northwestern Lurie Children’s Hospital (Pediatric Oncology) where his research interests included social medicine (unconscious bias in medicine, medical racism) as well as pediatric sarcomas, adolescent and young adult cancers and, of course, fibrolamellar carcinoma of the liver.

After retiring from Rush, Dr. Kent accepted a job as the Medical Director for the FibroFighters Foundation in order to dedicate all of his energy, research, and advocacy to this rare cancer. Dr. Kent has numerous research publications and national presentations on fibrolamellar carcinoma.

The most important thing to know about Dr. Kent is he has 5 (teenage) children, an amazing partner and is blessed beyond measure with a healthy family.

I live in Orange County, California with my husband, Ryan and two boys, Maverick, and Lincoln.  My family is the most important thing in my life, second to God.  I currently am a stay-at-home mom, but prior to deciding that “career change” I was a businessowner for just shy of five years.  I wore many hats as I ran a small esthetic business-handling the everyday operations, marketing, and my favorite-caring for my clients.  I am inspired by what my dad does for each individual FibroFighter as well as the collective community by working tirelessly to guide, educate and coach patients and families through their trying journey.  I watched my brother, Robert, bravely fight this cancer with my dad as second in command advocating for him each step of the way.  Knowing how important this work is to my dad and to the memory of our fallen warrior, I am honored to be named secretary for the Fibro Fighters Foundation. 

My name is Matt Merscheim and I’m a Southern California native, raised in the San Diego region. I grew up camping and hiking throughout the southwest and am an avid mountain biker and suspect golfer. I’m married with two amazing kids, a 5-year-old boy and 2-year-old girl and spend most of my free time at swim lessons, tee-ball games, and trying to make my wife laugh at the same old jokes. After college I have spent my career working as an Environmental Professional in the electric utility industry. I have worked as a consultant, a utility employee, and most recently as a utility contractor. My background is in field biology, but I have performed a wide range of tasks from technical document preparation/review as well as utility infrastructure planning and design. Currently I provide environmental compliance management for my employer’s construction activities throughout Southern California. 

Laura is a Maryland-native who believes in the power of community engagement and education. She spent two years teaching English in Taiwan before moving back to the States where she currently works for a small elementary education programming start-up.

Laura was diagnosed with fibrolamellar in 2019 at the age 25. She is currently receiving immunochemotherapy treatment. Laura is thrilled to be a part of the FibroFighters team as a Patient Advocate. She hopes to foster a strong patient community and empower all fighters to advocate for themselves.

In her free time she enjoys traveling, trying new foods, and reality shows.

Joy’s repertoire is one of inspiration, advocacy and relentless love. She served as an advocate and liaison for those maneuvering through bureaucratic systems, through programs providing umbrella services for at risk families.

Joy is a business owner and holds certificates as a Forest Bathing Guide, Mediation Teacher, and Registered Yoga Teacher. She holds a bachelor’s degree in psychology, and presently  is a graduate student in Depth Psychology. Once obtaining licensure as an LPCC, her goal is to incorporate various modalities including rewilding to change the course of therapeutic outcomes.

 Presently, she is on the frontlines fighting cancer as an advocate for her daughter, Lacey, an FLC Fighter since 2015.  Joy came on board as the Lead Patient Navigator for FibroFighters Foundation in 2019.

“Advocating for my daughter, and creating the waves necessary for patient centered care is an act of revolutionary love”.