Shirley Ledlie
AUTHOR * WRITER * PATIENT ADVOCATE
Online Interview with Andrea Wilson Woods
Q: After losing your sister Adrienne at the age of 15 to hepatocellular carcinoma (HCC), you founded the non-profit Blue Faery: The Adrienne Wilson Liver Cancer Association. What part of your sister’s cancer journey gave you the idea?
A: All of it. However, I never intended to start a nonprofit. All I wanted to do was volunteer. I approached the largest liver disease charity in the US. At that time, they were not doing anything for primary liver cancer (HCC). Since my background is writing and teaching, I offered to volunteer and create a program for them. They refused. They did not want to do anything in liver cancer. After doing more research, I found out there was not a single organization in the US dedicated to HCC. To quote Lily Tomlin I realized somebody needed to do something about it and then I realized that somebody was me.
Q: How long did it take you to get it up and running and why did you decide on non-profit?
A: As soon as I made the decision, I began. Within two months, I had filed the paperwork to become a nonprofit corporation in the state of California. It took a few more years to receive our permanent 501(c)(3) tax-exempt status from the federal government. Creating a nonprofit seemed like the most logical choice at the time.
Q: What international alliances does the Blue Faery have?
A: Most recently, we supported the Asia-Pacific Primary Liver Cancer Expert Association (APPLE) and encouraged them to do more events in the US. As a result, a two-day conference in partnership with Memorial Sloan Kettering and the University of Hawaii is occurring this month for healthcare providers who treat primary liver cancer.
Q: Your mission is to prevent, treat and cure primary liver cancer, specifically hepatocellular carcinoma, through research, education and advocacy. Do you think this is all doable being a volunteer-driven organisation?
A: This month, we celebrate our 18th anniversary so it must be doable. We are still largely volunteer-driven. We have been fortunate to find wonderful volunteers on LinkedIn and Volunteer Match. We do outsource our accounting and web development/security, and we often use Upwork to hire independent contractors for specific projects.
Q: On the website it states you educate the public. What steps do you take to achieve this?
A: Our first and ongoing initiative was our HCC Patient Education brochures for patients, their families, and their healthcare providers. We continually update the brochures, which are written in layman’s terms, translated into Spanish and Chinese, and shipped free of charge worldwide.
We are excited to do our first public awareness campaign about liver cancer prevention. In February 2021, our Love Your Liver campaign will run over 28 days and it will target all Americans at risk for liver disease or currently living with liver disease that can lead to primary liver cancer.
Primary liver cancer is one of the deadliest, yet most preventable, cancers in the world.
Q: Tell us about the Blue Faery Award for Excellence.
A: The Blue Faery Award (BFA) for Excellence in Liver Cancer Research is given annually on April 8, which is Adrienne's birthday. The award is specifically for innovative HCC research. The award period opens in late October and the deadline is January 31. International applicants may apply. The entire award application is done online. Often, patients and graduate students nominate their doctors and mentors, respectively. Apply here: www.bluefaery.org/blue-faery-award/blue-faery-award-application/
Q: What are the most common risk factors of hepatocellular carcinoma and is it hereditary?
A: The risk factors fall into three general buckets: viral hepatitis, lifestyle choices, and environment. Though some genetic diseases can lead to liver cancer, they are rare. The more common risk factors are
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Chronic hepatitis B (transmitted through bodily fluids) and/or hepatitis C (transmitted through blood).
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Lifestyle choices including alcohol abuse and obesity that can lead to cirrhosis and fatty liver disease
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Environmental toxins or poisons such as aflatoxin, a known fungus in Asia that has correlative links to liver cancer
The important thing to understand about liver cancer is it is a disease within a disease meaning a liver disease such as hepatitis C damages the liver leading to cirrhosis which can lead to liver cancer. But cirrhosis does not lead to liver cancer 100-percent of the time.
Q: The Blue Faery offers a Perthera report. Where did this idea come from and can you tell us more about what it entails? Do members of Blue Faery have to pay for it?
A: Blue Faery has a partnership with Perthera, a precision cancer analysis company. If people discover Perthera through Blue Faery, they do not have to pay for their Perthera report, which helps their oncologist determine the best possible treatment for their liver cancer.
Note: Blue Faery is not paid in any way by Perthera nor does Blue Faery pay Perthera.
Q: You also co-founded the for-profit Cancer University or Cancer U for short. How long has this been up and running and how does this differ from the Blue Faery Association?
A: Cancer U is a for-profit, social impact, health tech startup. My partner and I started the company in April 2018 in Birmingham, Alabama. (Blue Faery is still a California-based charity.) Cancer U is a separate company. Cancer U offers an online membership platform for cancer patients and caregivers to educate, empower, and engage them to become advocates for their cancer care.
Q: The website was designed in the colours black/white/grey. Is there a particular reason for choosing this colour scheme?
A: I believe most moments in life are grey, but when you hear the 'C' word for the first time, it is a black and white moment. You will always remember your life 'Before Cancer' and 'After Cancer'.
Q: Why did you choose for-profit for the Cancer U Association?
A: Charities are limited in their ability to scale and reach the masses. I want to make Cancer U available to every cancer patient and caregiver in the United States within 10 years. I would not be able to achieve that goal within the confines of a nonprofit business structure.
Q: Where do you see both organisations five years from now?
A: I don’t think that short-term. Five years is nothing. I think in terms of life goals. I would like to see primary liver cancer cured in my lifetime, and I figure I have another 30 years or so.
I would like to make Cancer U a household name so that whenever someone is diagnosed with cancer, they immediately receive a free membership to Cancer U.
When I was a kid, I didn’t know Jell-O was a brand. I thought all gelatin was Jell-O. I want Cancer U to be Jell-O.
Q: You must have amazing organisational skills, Andrea, to fit everything into your life! What a busy lady you are. Do you travel to different states when you are public speaking?
A: I used to travel a lot before the pandemic happened. Most of my public speaking events have been canceled or postponed indefinitely. But yes, I am the most organized person I know. 😉
About Andrea's Blog
Shirley: Andrea, somehow you manage to find the time to blog too. I read your recent blog titled Talking to the Dead. I was reduced to tears when I was just half-way through.
Andrea: Aww—thank you so much. I remember that post. I remember that moment. There is no shortcut or timeline for grief.
Shirley: Thank you so much, Andrea, for taking part in the Cancer Interview Hub and sharing part of your life and the incredible work you are doing.
www.linkedin.com/in/andreawilsonwoods
