Hello George,

Welcome to our first newsletter of 2026. I hope your year is off to a hopeful and healthy start.

If you attended The Liver Meeting or ASCO 2025, you may already know the newest face behind Blue Faery's programs, our Program Manager, Aura Sanchez. Aura joined our team in May, just three days before ASCO, and she jumped in immediately. At our booth, she met oncologists from across the world and connected with clinicians from South America in Spanish, thanks to her Colombian roots. From the start, we knew we were fortunate to have her.

In this episode of Behind Beautiful Things, host Kevin sits down with Andrea, author of Better Off Bald: A Life in 147 Days, for a powerful and heartfelt conversation. Andrea shares the inspiring story of her sister Adrienne and her courageous battle with liver cancer, reflecting on their close bond, Adrienne’s resilience, and the lasting impact of her journey.

Listeners will hear Andrea discuss her early life, the deep relationship she shared with her sister, and how Adrienne’s legacy led to the creation of Blue Faery, a nonprofit organization dedicated to raising awareness and support for liver cancer patients. This episode is a moving exploration of love, loss, advocacy, and honoring life through purpose.

I'm writing this newsletter on the eve of what would have been my dad's 79th birthday. He died from lung cancer on April 24 of this year; my mother died four days later. My dad, with whom I had a better relationship (despite my stepmother's repeated attempts to cut me out of his life), experienced unnecessary pain and suffering. To quote him, "I didn't realize it [cancer] would be such a slog."

The journey through a serious medical condition is never easy, but when the diagnosis is cancer, it can be downright harrowing. As a clinical psychologist and woman, I’ve personally known the deep pain of losing loved ones to cancer, and the challenges are surely intense. And for all the souls who have been through similar experiences, you know how taxing it can be physically, mentally, and spiritually. In this episode, Dr. Carla Manly is joined by Andrea Wilson Woods, a renowned patient advocate, author of the award-winning book, Better Off Bald: A Life in 147 Days, speaker, and founder of the nonprofit Blue Faery: The Adrienne Wilson Liver Cancer Association, will tell her story, increase our knowledge, and give us uplifting hope along the way.

November is National Family Caregivers Month, a time to honor the quiet, relentless courage of those who care for loved ones with liver cancer. In mid-October, our The Truth About Liver Cancer: Unmet Needs workshop highlighted a reality we encounter every day in our community: caregivers bear the burden of complex medical tasks, logistics, and deep emotions often without sufficient support.

Andrea Wilson Woods, patient advocate, speaker, and founder of Blue Fairy: The Adrienne Wilson Liver Cancer Association, shares the powerful legacy of her sister Adrienne’s book, I’d Rather Be Dead Than Deaf: A Young Woman’s Journey with Liver Cancer.

October has always been a complicated month for me. It's a season of remembrance and renewal—when I reflect on Adrienne's life, her loss, and the purpose her story continues to give mine. Twenty-four years ago this month, Adrienne died of liver cancer. She was only fifteen. I still think about how unfair it was that such a bright, creative, compassionate young girl was taken by a disease most people had never even heard of.

Back then, no one talked about liver cancer, much less hepatocellular carcinoma. There were no awareness campaigns, no ribbons, no research focused on finding better treatments or earlier diagnoses. I remember feeling completely alone, fighting an invisible battle against an enemy most couldn't even name. That's why Liver Cancer Awareness Month is so essential—it shines a light on what was once hidden in the dark. It gives a voice to patients like Adrienne and to families like mine who never stopped fighting for answers.

“Patients living with hepatocellular carcinoma (HCC) face significant barriers to receiving quality care, including delays in diagnosis and treatment, disease stigma, and financial challenges,” researchers wrote in medRxiv, a health sciences preprint platform. “While many care-quality studies have been published, and many delivery metrics are in use, few have focused on the patient and caregiver perspectives, and even fewer metrics are derived directly from those perspectives.”

The study team developed a three-part measurement system to classify patient experiences during treatment for hepatocellular carcinoma (HCC). They classified patient experiences around “grounded constructs,” including education, self-advocacy, and medical record utilization, as well as integrated care teams, including support groups, counselors, dietitians, palliative care clinicians, and patient navigators. These constructs were further cross-categorized based on care quality and root cause.

Blue Faery was born out of loss—and out of love. When my sister Adrienne died of primary liver cancer at only 15 years old, I wanted her story would matter. I promised that other families would not have to face this disease alone.

That promise lives on through our community, programs, and donors. And today, I want to tell you about one of the most powerful ways you can stand with us: the Summerland Sustainer Society.

Today, on Notable Leaders’ Radio, I speak with Andrea Wilson Woods, President & Founder, Blue Faery. She highlights how she transformed early hardship, loss, and fierce protectiveness into founding Blue Faery, a nonprofit dedicated to liver cancer advocacy, while sharing lessons on empathy, resilience, and finding joy amidst adversity.

When Kay was diagnosed with hepatocellular carcinoma (HCC) in 2008, the news was devastating.

Her doctors told her she had less than six months to live. At the time, the only treatment available for liver cancer was a transplant — but Kay wasn’t eligible. She had already fought and survived breast cancer just 11 months earlier, and the medication she took for it, Tamoxifen, had caused her HCC.

We are proud to announce that Sarah Schiltz, a Blue Faery Board Director, has been named in Cancer Health’s prestigious Cancer Health 25 list — a national salute to individuals who are making a powerful impact in the cancer community.

This prestigious accolade highlights leaders across the U.S. who are driving meaningful change: providing patient support, bridging gaps in care, elevating marginalized voices, and shaping a more inclusive cancer community. Sarah exemplifies our mission — guiding patients and caregivers through the complexities of hepatocellular carcinoma (HCC) with empathy and expertise.

This past Father's Day was the first one without my Dad*, who died from lung cancer on April 24. I'm swimming in mixed feelings about my Dad dying. I was driving to see him—3.5 hours into an eight-hour trip—when my stepmother texted me that he had died. (Yep. She didn't call; she texted.) As I entered Memphis, I turned the car around and went home.

Now, I've lost seven family members to five different types of cancer: bone, breast, lung, head/neck, and liver cancer or HCC.

A new qualitative study published on medRxiv offers critical insights into the lived experiences of patients diagnosed with hepatocellular carcinoma (HCC), the most common type of primary liver cancer. The research highlights the numerous barriers these patients face, including delayed diagnoses, fragmented care, social stigma, and financial hardship.

Conducted by Michelle Liu and Matthew Loxton of the Blue Faery, the study introduces a novel three-part measurement framework to better understand patient experiences. Key areas identified include the role of patient education and self-advocacy, the use of medical records in care navigation, and the availability of integrated support services such as dietitians, palliative care providers, and mental health counselors.

Patient advocates provide support, education, prevention, treatment, care, and more, especially for the poor, marginalized, and underinsured.

In this micro learning, developed by experts Assoc. Prof. Lorenza Rimassa and Dr Amit Singal, you will learn about treatment strategies for patients who are ineligible for immunotherapy (IO) or those with progression on IO in advanced HCC.