Our Team

Meet The Directors

Tom Stockwell, Founder and Executive Director

Tom Stockwell, Founder and Executive Director

Please allow me to begin by saying I am not a medically trained professional; however, over the past 8 years I was thrown into a full-time role as a student learning everything I could about our rare cancer.

Years ago, I was attending college and working in retail management when meeting my beautiful wife, Carrie. Recently we celebrated our 41st year of marriage, and we have three beautiful children, one of whom we miss deeply every single day! I never imagined I would ever need to step away from my retail management career, that was until we heard the horrific news that our 18-year-old son Robert had been diagnosed with an extremely rare cancer called Fibrolamellar Hepatocellular Carcinoma. (Fi-bro-la-mell-ar) in December of 2013.

For anyone who has been a full-time caregiver, you understand nothing can prepare you for the road ahead; it was truly a 24/7 quest. In 2015 after deciding my son’s care would require my full-time around the clock attention, I resigned from my retail position and became obsessed with learning everything I could about FLC attempting to save our boy’s life. I read every study, spoke with clinicians, surgeons, researchers, and other industry experts to help explain various medical terms and jargon which I had little comprehension. No stone left unturned, as the old saying goes. What wouldn’t a parent do in order to save their child’s life?

Robert and I were like peas and carrots, and we loved each other tremendously, but had our moments when we sparred like two gladiators in the ring! Robert and I began helping patients. We would meet online sharing general knowledge. He and I developed a simple Fibro survey, which was very comprehensive at the time, and we would share the interesting commonalities we had learned with the Facebook group. When Robert passed away in March of 2017, I had promised Robert to forge on and continue the fight we began together years earlier, and although Robert was no longer physically beside me, he was and is with me spiritually each day. Robert and all the FibroFighters, past and present, motivate me to continue our advocacy work for all who seek us out. I am so proud of our growing team of advocates and the many accomplishments we have achieved over the years, and please know our team is committed to help you and plan to keep our promises to ‘Slay this Fibrolamellar Beast Together”.

Dr. Paul Kent, Medical Director

Paul Kent, Medical Director

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 began consulting 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.

Meet The Advocates

Patient Advocates

Our incredible team of volunteer patient advocates are all fibrolamellar fighters, each with their own unique experiences with the disease. They are all dedicated to building a strong community of fighters.

Paris Adams

Paris Adams

Tacoma, Washington

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

Danielle Duran Baron

Columbia, Maryland

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 that affected her deeply. Five years later, she dealt with a recurrence and has been cancerfree ever since. As a twotime fibro survivor, Danielle has used her experience to raise awareness about the disease and to advocate for patients in different parts of the 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 the Government Relations and Advocacy Professionals Advisory Council. She is also the President of the Board of Luminus, a Marylandnonprofit helping immigrants thrive in their communities. When not working or volunteering, Danielle can be found at her sons’ soccer games, where she is the loudest parent on the sidelines.

Laura Golian

Laura Golian

Chicago, Illinois

Laura was diagnosed with fibrolamellar at the age 25. She received multiple surgeries and  immunochemotherapy treatment. Today, she shows “no evidence of disease” and credits the support of FibroFighters with helping her get to where she is today.

Laura is thrilled to be a part of the FibroFighters team as a Patient Advocate. She believes in the power of community engagement and education. She hopes to foster a strong patient community. She manages the website, social media accounts, and hosts monthly patient-only virtual meet ups.

Beyond her work with FibroFighters, Laura is a yoga teacher and avid traveler. She currently lives in Chicago and works for an education programming company.

Terra Goudge

Terra Goudge

Moorpark, California

Hi, My name is Terra. I am a wife and mother of two beautiful girls. I was diagnosed with Fibrolamellar in July 2001 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 fulltime 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 Naim

Jansher Naim

New York, New York

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.  

Ethan Neumann

Ethan Neumann

Dallas, Texas

 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 IDH1mutant 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.

Corey Robison

Corey Robison

Omaha, Nebraska

My name is Corey Robison. I am 27 years old, and a I am a twoyear 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.

Lacey White

Lacey White

Agoura Hills, California

Lacey Grace is a motivational speaker, presently wrapping up her Bachelor’s of Psychology. She is a 7- year fighter, conquering 10 major surgeries and 7 years of various therapies including chemotherapy, ablation, radiation, and immunotherapy. Throughout her cancer journey, she’s kept a balanced, full, active lifestyle that includes being a full time student and having a career. One her favorite places to be is at the beach with her Golden Retriever, Cali. Lacey proudly joined FibroFighters as a Patient Navigator.

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

Caregiver Advocates

Our amazing team of volunteer caregiver advocates come from different backgrounds, but all love someone with fibrolamellar and are dedicated to supporting their fighter and the whole community.

Amanda Adams

Amanda Adams

Tacoma, Washington

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 Capece

Emily Capece

Cleveland, Ohio

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 Funkhouser

Joy Funkhouser

Agoura Hills, California

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”.

Mary Hope Mitchell

Mary Hope Mitchell

Evanston, Illinois

My name is Mary Mitchell.  I am the mother of Emma who was diagnosed with Fibro in late 2015 at the age of 15. I just retired from 31 years of teaching high school special education.  I am also a part time mental health therapist. We have been on this journey for seven years now after a number of major surgeries and seven different chemo/immunotherapy treatments.  She is currently in remission and is doing fantastic.  I attribute it all to Dr. Kent who has been her primary oncologist from day one.
In my role as a Care Giver Advocate with the FibroFighters Foundation, my goal is to help, listen, and empower care givers and their families about Fibrolamellar Carcinoma.

Rachel Moore

Rachel Moore

Heber Springs, Arkansas

I am a Friend of God and friend to all His people!  I am a Wife of thirty years, Mother of 6 girls including one fighter who resides in heaven, and a Yaya to currently 8 grandchildren. However, that number is sure to grow! My husband and I own a cafe and bbq restaurant and catering business that keeps us on our toes on the daily! 
My battle with “the beast” Fibrolemeller began in September of 2011 when my then 12 year old daughter was diagnosed! Since then I have navigated all things doctor, insurance, not chemo vs chemo, medications, hospitalizations, angel flights, out of state treatment in state treatment, lodging, being caregiver to a child and the transitions through puberty, adulthood, and her home-going! That navigation would not have been possible without my God and Tom Stockwell/FibroFighters! 

Pictured left to right: Ethan Neumann, Danielle Duran-Baron, Laura Golian, Tom Stockwell, Terra Goudge, Corey Robison

Meet the Executive Committee

Tom Stockwell

Tom Stockwell

Executive Director and Founder

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.  

Dr. Paul Kent

Dr. Paul Kent

Medical Director

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.

Joy Funkhouser

Joy Funkhouser

Co-Chairperson

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”.

Mary Hope Mitchell

Mary Hope Mitchell

Co-Chairperson

My name is Mary Mitchell.  I am the mother of Emma who was diagnosed with Fibro in late 2015 at the age of 15. I just retired from 31 years of teaching high school special education.  I am also a part time mental health therapist. We have been on this journey for seven years now after a number of major surgeries and seven different chemo/immunotherapy treatments.  She is currently in remission and is doing fantastic.  I attribute it all to Dr. Kent who has been her primary oncologist from day one.
In my role as a Care Giver Advocate with the FibroFighters Foundation, my goal is to help, listen, and empower care givers and their families about Fibrolamellar Carcinoma.

Corrine Carlson

Corrine Carlson

Secretary

Corinne is excited to join the FibroFighters team, inspired by her niece’s diagnosis in 2015 at the age of 15. She brings extensive organizational and management skills from her 35-year career in Human Resources, having worked in various corporations and consulting firms. Corinne holds a BA in Mathematics and Philosophy from Denison University and an MBA from the J.L. Kellogg Graduate School of Management at Northwestern University. She has a son who lives and works in Minneapolis and a daughter attending college in Northern California. In her free time, Corinne enjoys spending time with her family, traveling, and engaging in wellness activities such as reading and walking.

Elise McKenna

Treasurer

Laura Golian

Laura Golian

Patient Engagement Director

Laura was diagnosed with fibrolamellar at the age 25. She received multiple surgeries and  immunochemotherapy treatment. Today, she shows “no evidence of disease” and credits the support of FibroFighters with helping her get to where she is today.

Laura is thrilled to be a part of the FibroFighters team as a Patient Advocate. She believes in the power of community engagement and education. She hopes to foster a strong patient community and empower all fighters to find the best treatment plan for them. She manages the website, social media accounts, and hosts monthly patient-only virtual meet up groups.

Beyond her work with FibroFighters, Laura is a yoga teacher and avid traveler. She currently lives in Chicago and works for an education programming company.

Dennis Neal

Dennis Neal

Marketing Director

Dennis is happy husband to Denise (32 years) and father of two children. His daughter Ella is a graduate of CU and works for Douglas county school district. She was diagnosed in February 2021, and with the support from Fibrofighters continues her cancer journey with confidence and grace. His son Eric is a graduate of CSU and works in Denver in property management. Dennis is semi retired and enjoys hiking, fishing, skiing and golfing   He and his wife Denise guide annual Fibrofighters fundraising journeys on the Camino Santiago Trail in northern Spain.

Meet the Scientific and Medical Advisors

Dr. Paul Kent

Medical Director, FibroFighters

Santosh Kesari, MD, PhD

Director of Neuro-Oncology, Providence Saint John’s Health Center

Erik Schadde, MD, FACS, FEBS (HPB)

Associate Professor of Surgery, Division of Transplant Surgery - Department of Surgery, Rush University Medical Center 

Jordan Tasse, M.D.

Associate Professor of Radiology, Vascular & Interventional Radiology Director of Interventional Oncology, Rush University Medical Center

Dr. Robert Nagourney

Nagourney Cancer Institute

Tim Stuhlmiller

VP of Scientific and Medical Affairs, xCures

Julie Friedland

Director, Precision Medicine, xCures

Alanis Sabates

Clinical Data Associate, xCures

Young Hee Ko M.S., M.S., Ph.D.

KO Discovery

Meet the Board

Tom Stockwell

Executive Director, Founder

Laura Gregory

Secretary

Danielle Duran-Baron

Director

Joy Funkhouser

Director

Dennis Neal

Director

Steven J. Rogers, Jr.

Attorney

Carrie Stockwell

Chairwoman

Matt Merscheim

Treasurer

Janet Earyle

Director

Dr. Robert Nagourney

Director

Corey Robison

Director

Elise McKenna

Director