Monthly Newsletters
April 2025
Welcome to the fifith 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. We’d love to share your publications and other resources with our membership. Please send to [email protected]
ACE Members: Recent publications, presentations and recognitions
Cuts to Biomedical Research will cost lives, Scientific Breakthroughs and Careers. Deepti Pradhan and Christine Ngaruiya (Truthout)
Austin Proclaims March 1 Kidney Cancer Awareness Day (Thanks to the initiative of Annamaria Scaccia)
Two of our abstract submissions were selected for the Multinational Association of Supportive Care in Cancer (MASCC) Annual Meeting in Seattle.
- Seeing the person through the Forest Plot: A Co-Created Quality of Life Survey
- Advocacy-Led Co-Creation to Advance Quality-of-Life Research for Individuals with a Diagnosis of History of Cancer
Gitte Joergensen has been named an Elevate Ambassador of the National Coalition for Cancer Survivorship.
Making the most of cancer (Bob Riter on the Living Beyond Breast Cancer website)
ACE Members will be attending/presenting at upcoming Meetings (Look for them and support them if they’re giving presentations)
- Stacey Tinianov has been at the Annual Congress of the Oncology Nursing Society in Denver, April 9-13.
- Many ACE members, (including Jill Feldman, Allison Rosen, Stacey Tinianov, Bob Riter Judy Fitzgerald, Patty Spears, and Eugene Manley), will be at the AACR Meeting in Chicago from April 25-30.
- There is a Patient Advocate Session at AACR on April 27, 2025, 3:00 PM – 5:00 PM. Patty Spears is the moderator, and Bob Riter and Eugene Manley are among the presenters.
- Megan-Claire Chase will be presenting at the annual conference of the Association of Oncology Social Workers, June 11-13, 2025 Atlanta, GA
- Sabine Schwab (Advocate): National Brain Tumor Society Head to the Hill, May 4-6, Washington, DC.
- Sabine Schwab will be serving as a moderator at the American Brain Tumor Association National Conference, September 12-14, Chicago.
- Brad Power serves as the moderator of a weekly webinar series, The Cancer Patient Lab, every Wednesday at noon, ET.
- Prisca Githuka participated in the NCD Global Forum in Kigali in February and was selected as a member of the Patient Advocates working Group of the European Society of Medical Oncologists( ESMO) 2025-2026.
- Wes Wilson (Presenter): 04/30 – 05/02: Cellicon Valley ’25: The Future of Cell and Gene Therapies.
- Annamaria Scaccia (Host): Annamaria Scaccia, KCA Regional 81K Challenge, April 12th, Austin, TX
- Annamaria Scaccia (Moderator): Chromophobe Kidney Cancer 101 – Live with Dr. Pavlos Msaouel, Virtual Only; March 18, 4 pm CT, Zoom,
- Tracy Cushing (Moderator): Front range ILC and Sikora lab event, 4/11, Anschutz medical campus Aurora CO.
- Carolyn Taylor (Keynote speaker): Hematology Oncology Pharmacist Association Annual Meeting April 11, 2025, Portland, Oregon.
- Carolyn Taylor (Presenter): Second General Meeting of the WHO Global Coordinating Mechanism on NCDs, April 24-25, 2025, virtual only
- Gitte H Joergensen (Elevate Ambassador): Elevating Survivorship NCCS May 8-9, Washington DC.
- Steven Merlin (Panelist): Hematology Oncology Pharmacy Association (HOPA), 4/8-13/2025 Portland, Oregon.
- Steven Merlin (Booth from Seena Magowitz Foundation (Pancreatic Cancer Advocacy)): American Association of Cancer Research (AACR), 4/25-30/2025. Chicago , AACR.org
- Steven Merlin (Research Patient Advocate on GI Cancers Committee of ECOG-ACRIN):, ECOG-ACRIN (Eastern Comprehensive Oncology Group-Academy of Clinical Radiology and Imaging, 5/13-15/2025. Tampa, Florida.
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 that Caught our Eye
Patient Support
- Cancer Survival Tookbox (NCCS)
- Research Updates from FORCE
- Articles from the Journal of Patient Experience
- Cancer Straight Talk Podcast (Memorial Sloan Kettering)
- Campfires of Hope Podcast (EPIC Experience)
- Survivor Profiles (Cancer Today – you’ll see several ACE members)
Research Advocacy
- Research Advocacy Training and Support (Fight Colorectal Cancer)
- Grand Cancer Challenges – Advocacy
Policy and More
- Advocates on Capitol Hill and Across the Country Urge Congress to Prioritize Research Funding, Fix Prior Authorization, Help End Drug Shortages (ASCO in Action)
- Breast cancer activists in the 90s got DOD to fund cancer research—now that program has been gutted (Cancer Letter)
Advocate Opportunities
- The International Society of Patient Engagement Professionals
- The Application Window for applying for Alamo Advocate Scholarships to the San Antonio Breast Cancer Symposium is now open
- AACR Annual Meeting (April 25-30, Chicago). Info on Patient Advocate Registration. What to know before heading to the AACR Annual Meeting
This newsletter will evolve, so your feedback is welcome! Please email your suggestions and items for inclusion to [email protected]
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. We’d love to share your publications and other resources with our membership. Please send to bobrit…@gmail.com
March 2025
Recent publications and presentations by ACE Members
- From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials(Melinda Bachini in CURE Magazine)
- Are We at Risk of Losing Our Breast Cancer Community?(Martha Carlson in CURE)
- In Appreciation of Community Oncologists(Bob Riter in the ASCO Connection)
Other articles by and/or about advocates
- Woman, 41, has been diagnosed with 7 different types of cancer: ‘It sucks but I’m here’ (Lainie Jones shares her experience with Li-Fraumeni syndrome on the TODAY Show website)
- Nina Morena and Ari Meguerditchian on Vlogging About Breast Cancer(Medpage Today)
- Pioneering Changes in Patient Advocacy with Kimberly Richardson(HemOnc Today)
- “I learn by going where I have to go”: Patient advocate Jim Mulcahy on giving care, perseverance through grief, and humanizing palliative care (McGill)
- “There’s No Cure Without US”: One Woman’s Mission to Transform Awareness and Care for Black Patients with Multiple Myeloma (ESSENCE)
ACE Members will be attending/presenting at upcoming Meetings (Look for them and support them if they’re giving presentations)
- Stacey Tinianov will be at the Annual Congress of the Oncology Nursing Society in Denver, April 9-13.
- Alison Rosen, Stacey Tinianov, Judy Medeiros Fitzgerald, and Bob Riter (and others!) will be at the AACR Meeting in Chicago from April 25-30.
- Megan-Claire Chase will be presenting at the annual conference of the Association of Oncology Social Workers, June 11-13, 2025 Atlanta, GA
- Sabine Schwab will be serving as a moderator at the American Brain Tumor Association National Conference, September 12-14, Chicago.
- Brad Power serves as the moderator of a weekly webinar series, The Cancer Patient Lab, every Wednesday at noon, ET.
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 that Caught our Eye
Patient Support
- Five Things Every Patient Should Know about Hospital Financial Assistance (Lown Institute)
- Tackling Colorectal Cancer Care Inequities Through Patient Advocacy Groups (AJMC)
- Empathy: The Human Connection to Patient Care (This is from the Cleveland Clinic and is a few years old, but it’s worth watching if you haven’t seen it).
Research Advocacy
- VOICE: Barts Cancer Institute: Science for Patient Advocates (Cancer Research UK)
- How to Become a Research Advocate (FORCE)
Policy and More
- Destigmatizing Cancer in African American Communities: The Power of Open Communication (AACR)
- The Race to Explain why More Young Adults are Getting Cancer (TIME)
- Threats to Federal Research Funding Resource Center (FASEB)
Advocate Opportunities
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
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