Monthly Newsletters
February 2025
Welcome to the third edition of our newsletter. Our goals are to highlight activities of our members, share resources and news related to cancer advocacy, and announce upcoming programs that might be of interest. The links are to items that caught our eye. If you have items to share, please send them to bobr…@gmail.com
Advocate Recognition
- “There’s a hole in the earth.” Cancer patients turned advocate dies
- On World Cancer Day, NCCN Patient Advocates Share What Makes Their Journeys Unique
- Melbourne cancer advocate receives MPN Hero Award
Highlighting activities of ACE Members
New positions
- Michelle Audoin becomes the chair of the Patient Representative Committee of the Canadian Clinical Trials Group
- Kelly Shanahan becomes the president of METAvivor.
Recent publications and presentations
- Debt or Dying: The High Cost of Cancer Care in America, One Patient’s Perspective (an article by Kelly Shanahan in JCO Oncology Practice)
- Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study (authors include Allison Rosen and Desiree Walker)
- Roberta Albany presented a MASCC (Multinational Association of Supportive Care in Cancer) webinar on Managing Menopause After Breast Cancer: Weight, Hot Flashes in Rehabilitation
- An article by Jill Feldman, The Power of Unity: Why the Lung Cancer Genetics Study Matters, recently appeared in CURE Magazine.
- Stacey Tsianov was on a panel “Measuring Tumor Aggressiveness: How Nanotechnology is Shaping the Future of Cancer Diagnostics” at a recent Precision Medicine World Conference
Forthcoming presentations
- What is a P-Value Anyway? (An Introduction to Biostatistics) Stacey Tinianov is the presenter. Monday, March 3,
- Wes Wilson will be a presenter at the Cancer Immunotherapy: Clinical Lessons to New Modalities conference, March 16th-20h
- Wes Wilson will be a presenter at the Cellicon Valley ’25: The Future of Cell and Gene Therapies conference, 04/30 – 05/02
Are you attending an event that might be interesting to other ACE members? Are you presenting at an event and would like to have some friendly faces in the crowd? Have you recently published an article? Please let us know with this simple form and we’ll spread the word!
Articles and Links of Interest
Patient Support
Cancer Care Services for Patients and Survivors
Cancer Types A-Z MacMillan Cancer Support
Research Advocacy
Redefining cancer research with trained patient advocates (Stanford)
AACR Patient Advocate Forum: Patient-Centric Cancer Clinical Trial Design
Policy and More
Association of Health Care Journalists
NIH slashes overhead payments for research (Science)
Advocate Opportunities
- Advancing the Future of Diagnostics and Regulatory Innovations Workshop: Sharing Next Steps and Opportunities with Advocates (Wed. Feb. 19, 1-2pm ET) Friends of Cancer Research
- Become an advocate (Stand Up to Cancer)
- ASCO Program for Patient Advocates, (May 30 – June 3). NOTE: The application period for scholarships opens on Monday, March 10 at 10:00 AM and closes on Monday, March 17 at 5:00 PM (ET)
- AACR Annual Meeting (April 25-30, Chicago). Info on Patient Advocate Registration
This newsletter will evolve, so your feedback is welcome! Please email your suggestions and items for inclusion to bobr…@gmail.com
January 2025
Welcome to the second edition of our newsletter. Our goals are to highlight activities of our members, share resources and news related to cancer advocacy, and announce upcoming programs that might be of interest. The links are to items that caught our eye. If you have items to share, including upcoming talks or presentations that you’re giving, please send them to bobr…@gmail.com
Advocate Recognition
- 100 Influential women in Oncology: Key Opinion Leaders to watch on Social Media (Stacey Tinianov, Abigail Johnston and Ginny Mason are included)
- NBCC President Fran Visco Receives Presidential Citizens Medal
Articles and Links of Interest
Patient Support
Advocacy and support groups (an impressive compilation from NCCN)
Featured research and clinical trials (FORCE)
Making Cancer a Family Affair (An interview with Michelle Audoin in AACR’s Cancer Today)
Campfires of Hope (Podcasts)
Research Advocacy
Dana Farber/Harvard Breast Cancer Center Advocates
How patient advocates help cancer research (An interview with Patty Spears)
Milestones in cancer research and discovery (NCI)
The bench with bedside initiative (USC Norris Cancer Center)
Policy and More
Progress, momentum to improve patient access to quality, timely patient cancer care (American Journal of Managed Care)
Advocacy and Public Policy (CancerCare)
Advocate Opportunities
- AACR Virtual Advocate Forums
- Nominations for the Ellen L. Stovall Award (NCCS)
- Cactus Cancer Society Young Adult Cancer Advocate nominations
- Society for Integrative Oncology
December 2024
Welcome to the first edition of the Advocate Collaborative Newsletter!
With this newsletter, we will highlight our member activities, share resources and news related to cancer advocacy, and announce upcoming programs that might be of interest. If you have items to consider for inclusion, please send them directly to bobr…@gmail.com
From Members of the Advocate Collaborative
- NCCS Webinar: Multi Cancer Detection Tools: The Promises and Challenges (featuring Stacey Tinianov)
- As cancer treatment advances, advocates push back against ‘maximum tolerated dose,’ citing patient suffering (featuring Jill Feldman in FORTUNE)
- Connecting Cancer Researcher and Advocates: The Need for Regeneration (Bob Riter in the AACR Catalyst)
- Measuring what really matters: Advocacy-led co-creation and accrual of a pan-cancer QoL survey (ASCO Quality Care Seminar)
- Global Cancer Inequities and Advocacy (Carolyn Taylor)
Articles of Interest
Patient Support
Volunteer Patient Advocate Can’t Help Helping Others (Fred Hutch)
Health After Cancer podcast tackles survivorship, advocacy (Stanford)
Cancer interrupted their school lives, but slso set them on a mission (NPR)
Research Advocacy
Breaking Barriers in Cancer Research: How Advocacy and Compassionate Care Enhance Clinical Trial Access (Pharmacy Times)
Patient Involvement at Cancer Research UK
Policy and More
Why this Cancer Advocates like me are Leaving X (Janet Freeman-Daily)
Becoming a Patient Advocate: Getting Started (An interview with Rose Gerber in the J. of Clinical Pathways)
Advocate Opportunities
- Patient Advocacy Programs at AACR (Annual Meeting in Chicago in April!)
- The FDA Patient Representative Program
ACE Updates
- We’re now on Bluesky at @advocatecollab.bsky.social.
- We’re now on Instagram at https://www.instagram.com/advocatecollab/
- We are always interested in growing our membership – feel free to share links with other advocates or people who may be interested in learning more about advocacy. Join the Advocate Collaborative
This newsletter will evolve, so your feedback is welcome! Please email your suggestions and items for inclusion to bobr…@gmail.com