Join Patient Stories from the HCC Casebook
Blue Faery has partnered with PeerView to bring you Patient Stories from the HCC Casebook: Expert Guidance on Optimizing Outcomes and Care with Newly Available and Emerging Therapies. The activity will be live-streamed on PeerView's social media platforms.
The FREE HepatocellularCarcinoma CME/MOC web broadcast will be on June 30 at 7:00 p.m. EST. Register now https://bit.ly/HCCLive
Scientific Peer Review of Congressionally Directed Medical Research Programs’ PRCRP for the Department of Defense
The Congressionally Directed Medical Research Programs’ (CDMRP), Peer Reviewed Cancer Research Program (PRCRP) consumer advocate Andrea Wilson recently participated in the evaluation of research applications submitted to the PRCRP. President Andrea Wilson was nominated for participation in the program by Blue Faery last year. As a consumer reviewer, Ms. Wilson was a full voting member, along with prominent scientists at meetings to help determine how the $90 million appropriated by Congress for Fiscal Year 2019 will be spent on cancer research.
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment and quality of life. When commenting on serving as a consumer reviewer, Ms. Wilson, “This program allows patients and caregivers to actively participate in the future of cancer research. It is an amazing experience.”
Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since FY09. Colonel Stephen J. Dalal, Director of the CDMRP, expressed his appreciation for the consumer advocate’s perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.”
Scientists applying propose to conduct innovative research that successfully promotes high impact research for cancer, prevention, detection, treatment and survivorship. The PRCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.
More information about the CDMRP’s PRCRP is available on the website: https://cdmrp.army.mil/prcrp/default.
Public Affairs Specialist
Supporting the Congressionally Directed Medical Research Programs, USAMRMC
Blue Faery Attends The Liver Meeting
President Andrea Wilson, Volunteer Booth Manager Elizabeth Marquez and Board Director Matthew Loxton attended AASLD's annual Liver Meeting in Boston from November 8 – 11. More than 250 people visited Blue Faery's booth including numerous oncologists, hepatologists, nurses and medical students from all over the world. Many researchers expressed interest in applying for the Blue Faery Award. As always, Blue Faery's tote bags, water bottles and blue highlighters were a big hit with the entire crowd.
Every person who stopped by Blue Faery's booth received a free copy of Better Off Bald: A Life in 147 Days (so be sure to keep an eye on your inbox).
Pictured: Elizabeth Marquez and Matthew Loxton
President Andrea Wilson Attends Mayo SPORE Meeting
As a patient advocate representative, President Andrea Wilson attended the first Hepatobiliary SPORE Meeting at the Mayo Clinic in Rochester. Several other liver cancer advocates were present including executives from The Cholangiocarcinoma Foundation, Global Liver Institute and a survivor of Hepatocellular Carcinoma. The event included a dinner at the Mayo Foundation House as well as an all-day meeting with research updates, group discussions, and breakout sessions.
Pictured above: Dr. Lewis Roberts, Dr. Mark McNiven, Andrea Wilson, Dr. Sanford Simon, Dr. Mitesh Borad, Dr. Kabir Mody
Blue Faery Exhibits at ASCO 2019
President Andrea Wilson, Blue Faery Booth Manager Elizabeth Marquez and Volunteer Edward Hinton attended ASCO’s annual meeting in Chicago from May 31 – June 4. For the fourth year in a row, Blue Faery received one of the 32-coveted booths in the ASCO-sponsored patient advocacy pavilion.
During the conference, Andrea attended several sessions including the opening with guest speaker and bestselling author Dr. Atul Gawande and the ASCO Book Club. Additionally, Andrea met with over 20 current and future partners and gave two interviews.
On Sunday evening, Blue Faery hosted its 1st Annual HCC Partners Advocacy Workshop for its Blue Faery Benefactors Council. Representatives from Eisai, Exelixis and Genentech were present. The purpose of the meeting is to bring together all council members and develop a specific goal to achieve by October — Liver Cancer Awareness Month.
On behalf of Blue Faery’s Board, Andrea thanks Elizabeth and Edward, who did a fantastic job of running Blue Faery’s booth, which experienced traffic of over 400 people this year (a record!).
The most touching moment of the conference for Andrea was seeing Dr. Rafael Amado, the last doctor to treat her sister Adrienne before she died. Andrea had not seen Dr. Amado in over 17 years. A chance conversation with another doctor led to the knowledge that Dr. Amado was at ASCO. Dr. Amado, who rarely treated pediatric patients when he worked at UCLA, remembered Adrienne saying, “She was an angel.”
Blue Faery Exhibits at The Liver Meeting in San Francisco
President Andrea Wilson and Volunteer Booth Manager Elizabeth Marquez attended AASLD's annual Liver Meeting in San Francisco from November 9 – 13. More than 250 people visited Blue Faery's booth including numerous oncologists, hepatologists and medical students from all over the world.* Many researchers expressed interest in applying for the Blue Faery Award. As always, Blue Faery's tote bags, water bottles and blue Sharpies were a big hit with the entire crowd.
*Due to the large number of Mongolian doctors who visited our booth and Mongolia having the highest incidence of primary liver cancer in the world, Blue Faery's website now translates into Mongolian.
President Andrea Wilson Speaks At FDA
On September 26, 2018, Blue Faery President Andrea Wilson spoke at an FDA mini symposium titled Liver-Directed Therapies for Hepatocellular Carcinoma (HCC). Ms. Wilson was the only female and only non-doctor who spoke at the one-day event. She was honored to contribute to the patient's perspective about clinical trial eligibility. See her short talk on YouTube.
Blue Faery Hosts HCC Lunch & Learn
In collaboration with Eisai, Blue Faery hosted an HCC Lunch & Learn event where HCC patients, caregivers and one survivor came together to share their stories. Additionally, the group discussed treatment options and clinical trials for HCC patients. Two of the four caregivers present — Azure Klein and Cathy Anderson — are current Blue Faery volunteers. (See Blue Faery's Liver Cancer Community.) The participants traveled to New Jersey from California, Colorado, Texas, Alabama and Virginia.
Pictured: Azure Klein, Ryan Sharkey, Susan Sharkey, Cathy Anderson, Andrea Wilson, Bill Remak. Not pictured: Steve and Jane Kramer
Happy Birthday Blue Faery!
Today — December 19 — is bittersweet because it marks two important anniversaries.
- On this day, 15 years ago, Blue Faery was incorporated by the state of California. (When you file papers of incorporation, you don't have control over the date.)
- On this day, 23 years ago, Adrienne Wilson moved to Los Angeles to live with her older sister Andrea Wilson.
For Andrea, today marks two pivotal turning points in her life. The day she gained physical custody of Adrienne, and the day she began Blue Faery in Adrienne's memory. Andrea hopes by Blue Faery's 20th anniversary there will be more curative drugs for patients with advanced HCC. To advance Blue Faery's cause, give your 100-percent tax-deductible gift today!