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.

Hepatocellular carcinoma (HCC) is the sixth most common malignancy and the third leading cause of cancer-related death worldwide. Contemporary advances in systemic and locoregional therapies have led to changes in peer-reviewed guidelines regarding systemic therapy as well as the possibility of downstaging disease that may enable some patients with advanced disease to ultimately undergo partial hepatectomy or transplantation with curative intent.

May is Hepatitis Awareness Month, and at Blue Faery, this month carries deep, personal meaning. My sister, Adrienne Wilson, was diagnosed with both chronic hepatitis B and C—infections she likely contracted as an infant. We didn't know Adrienne had either virus until she was diagnosed with primary liver cancer at age 15. She died within 147 days.

Adrienne’s story is a powerful reminder of how hepatitis can quietly damage the liver for years before symptoms appear. Most people with chronic hepatitis don’t even know they have it—until it’s too late.

This May, Blue Faery: The Adrienne Wilson Liver Cancer Association proudly continues its award-winning Love Your Liver campaign, now in its fifth consecutive year. This life-saving, culturally tailored initiative raises awareness about liver cancer risk factors impacting Asian American and Pacific Islander (AAPI) communities.

Asian Americans are twice as likely as White Americans to be infected with chronic hepatitis B, the leading cause of liver cancer in this population. Foreign-born Asian Americans face even higher risks. The lack of early symptoms, coupled with language, stigma, and access barriers, makes liver cancer one of the most significant health disparities in this community.

In this micro learning developed by experts Prof. Aiwu Ruth He and Prof. Beau Toskich, you’ll learn about the expanding role of immunotherapy (IO) in hepatocellular carcinoma (HCC) and treatment strategies of combining it with locoregional therapy (LRT) for patients with intermediate HCC.