My Cancer Research Advocacy Activities (May 2023)

Cancer research advocacy encompasses several types of activities and a broad range of skills. The needs of the lung cancer patient population alone are HUGE, and no one person or organization has the time, skills, or bandwidth to address them all. The featured image on this post is a range of tall mountains for a reason.

I believe that the only way to stay engaged in cancer research advocacy over the long haul is to employ skills you enjoy using on projects that have personal meaning for you. I try to focus on activities that allow me to use my unique skills and (hopefully) improve outcomes for the greatest number of patients.

Some activities require multiple hours every week–these are my primary projects. Some have intense demands of several hours over a few days or weeks; examples are advisory boards, preparing a talk, grant reviews, or journal articles. Others may only require an hour or two each month, such as a serving as a patient advocate for a research committee.

To give you a sense of what one cancer research advocate’s activities might be, I’ve listed below those in which I’m currently involved. If this looks like a lot, please keep in mind that each advocate has a unique set of health and personal circumstances that influence how much of their energy and other resources they are able to give to advocacy. In my case:

  1. I am retired, no longer have children at home, and have the luxury of choosing what I want to do with my time.
  2. I’m on a cancer therapy that has tolerable side effects and leaves me with energy to do more than focus only on my own healthcare.
  3. I get to use skills I enjoy (e.g., writing, speaking, analyzing), work with smart people who are dedicated and compassionate, and learn about subjects I love (science and technology).
  4. The connections and reputation I’ve developed over ten+ years of lung cancer patient advocacy have brought me opportunities about which I wasn’t even aware when I first began advocacy work.

Primary Projects (several hours every week)

  • The ROS1ders nonprofit (co-founder, president, and board chair)
    A global group of patients and caregivers living with ROS1+ cancer that seeks to improve outcomes for all ROS1+ cancers through community, education, and research.
  • IASLC STARS program (co-developer and consulting staff)*
    STARS aims to increase the number of patient research advocates (PRAs) equipped to provide accurate scientific translation and patient perspective for lung cancer research and policy.

Advisory Panels

  • Fred Hutch/UW/Seattle Children’s Cancer Consortium External Advisory Board*
  • National Cancer Institute (NCI) PE-CGS Network External Advisory Panel
  • NCI Cancer Moonshot Biobank External Scientific Panel
  • HICOR Value in Cancer Care Initiative (VCCI) Steering Committee
  • Patient advisory boards for industry*

Patient Research Advocate

  • University of Colorado Cancer Center Thoracic Oncology Research Initiative (TORI)
  • NCI Small Cell Lung Cancer Consortium
  • Fred Hutch Lung Specialized Project of Research Excellence (Lung SPORE)
  • NCI Technology Research Advocacy Partnership (NTRAP)
  • The BMJ (also known as British Medical Journal) patient reviewer
  • Guideline development with professional oncology organizations
  • Co-author on journal articles and other writing projects
  • Invited speaker/panelist for conference presentations*
  • Participation in PCORI and other patient-centered research projects

Advocacy Organizations

Professional Organizations

  • International Association for the Study of Lung Cancer (IASLC), Patient/Survivor member
  • American Society of Clinical Oncology (ASCO), Patient Advocate member
  • American Association for Cancer Research (AACR), Affiliate member



When advocates provide value to projects, I believe they should be paid for their time, just as any other professional would be. I receive compensation for some activities (such as an honorarium for speaking); these are marked with an *. If an organization requires me to travel for a meeting, I receive compensation for travel expenses and often free conference registration.

I’m fine, just busy with research advocacy

Sorry I haven’t posted much in the past few years. It’s not because I’m sick — I still have no evidence of disease on scans after 10 years on the same targeted therapy for my ROS1+ cancer. It’s because I’ve been busy with living and with research advocacy projects.

Research advocacy brings the patient voice to research. By sharing the patient perspective with those engaged in cancer research, research advocates help keep research focused on what matters to patients with the goal of improving outcomes for patients.

For those interested in what research advocacy looks like, here’s an example.

I’m pleased to share that I will be presenting at the International Society for Biological and Environmental Repositories (ISBER) 2023 Annual Meeting on May 4, 2023, in Seattle. I’m one of the speakers in a session titled “Prioritizing Diversity, Equity, and Inclusion in Biobanking.”

I’ll be sharing my views on biobanking to enable research based on my advocacy experiences. These include serving on the External Scientific Panel for the NCI Cancer Moonshot Biobank; collaborating with The Broad Institute’s Rare Cancer Dependency Map Initiative; establishing the ROS1 Cancer Model Project; and learning about human research protection regulations and ethics during a term on The Secretary’s Advisory Committee on Human Research Protections (SACHRP).

If you’re an established lung cancer patient advocate and are interested in learning more about research advocacy, please consider applying for the IASLC STARS program.

IASLC STARS offers webinar for advocates on drug development process

The IASLC STARS program invites STARS alumni and anyone interested in cancer research advocacy to join us for a webinar about cancer drug development. 

When:               Monday August 29, 2022, at 11:00AM Eastern Time

Title:                Advocacy Opportunities in Cancer Drug Development and Regulatory Approval

Speakers:          Upal Basu Roy, PhD, MPH,
Executive Director of Research, LUNGevity Foundation
Janet Freeman-Daily, MS, Eng
cancer research advocate and STARS staff (moderator)

Languages:        English, with transcript translated into Spanish after the event

Learning objectives:

  • Acquire a high-level understanding of the drug development process and timeline
  • Identify differences in global regulatory approval pathways and how they impact drug access
  • Identify advocacy opportunities throughout the drug development process

Register (it’s FREE) at
After registering, you will receive a confirmation email containing information about joining the webinar.
Reach out to for more information.

The International Association for the Study of Lung Cancer (IASLC) offers webinars, training and networking opportunities to lung cancer research advocates through its Supportive Training for Advocates in Research and Science (STARS) program.  Thank you to our STARS partner Research Advocacy Network and our 2022 STARS sponsors Lilly, Bayer, BMS, and Genentech for supporting this event!

Use of Social Media and Communications Channels for #LungCancer Patient Advocacy #WCLC22 #LCSM

This presentation was given on April 6, 2022, by Janet Freeman-Daily (a lung cancer patient research advocate) at the IASLC 2022 World Conference on Lung Cancer (#WCLC22) in Vienna, Austria during the “Social Media + Communications Workshop.”

Help me celebrate nine years of effective targeted ROS1+ cancer therapy! 

In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer.  At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%.

However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is driven by an acquired alteration in the ROS1 gene. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effective for a cancer drug!

In the fall of 2012, I arranged to have my tumor tissue tested and discovered my cancer was ROS1+.  I mentioned the clinical trial option to my oncologist, and he recommended I join the trial (even though it required travel) because the preliminary trial results looked promising. All he could offer me otherwise was a lifetime on a chemo that didn’t make me feel much like living.

I enrolled in the trial in Denver, Colorado—over 1000 away from home—on November 6, 2012, and hoped for the best.

I’m still here thanks to research. Today marks 9 years since I took my first crizotinib pill. I have had No Evidence of Disease (meaning no cancer shows up on any scans) ever since.  Although I’m incredibly grateful to be alive and have a relatively normal life with tolerable side effects, I’m always looking over my shoulder.  No one can tell me if I’m cured, because few others have been on the drug this long.  Most patients find their cancer eventually becomes resistant to crizotinib and their cancer resumes growing.  The population of ROS1+ patients is relatively small (only 1-2% of lung cancer patients have ROS1+ cancer), so research on our type of cancer is sparse. We have some clinical trials in process, but no second line targeted therapy has yet been shown effective enough to obtain any government approval.

That’s why Lisa Goldman, Tori Tomalia (may she rest in peace) and I–all people who had ROS1+ lung cancer–decided to do something about it.  In the spring of 2015 we created a Facebook group for patients and caregivers dealing with ROS1+ cancer, and eventually formed a nonprofit known as The ROS1ders.  Our mission is to improve outcomes for all ROS1+ cancers through community, education, and research.  We have almost 800 members spanning 30+ countries, and are considered experts in our disease by some of the top oncologists in the world.  We’ve already helped create new models of ROS1 cancer that researchers have used in published research.

We’re now planning a research roundtable in December to explore ways to collect real-world data on ROS1+ cancers, and will be hosting a ROS1 Shark Tank event next spring that will award two $50,000 seed grants for new ROS1 projects. We’re aiming to raise $100,000 this year to fund our work.

Cancer research advocacy is my passion. I’m able to use my skills and time to help make a difference for hundreds of other people living with ROS1+ cancers. It’s a purpose that keeps me going despite the ever-present specter of potential recurrence.

Won’t you help me celebrate my 9th anniversary on my targeted therapy pill by donating to The ROS1ders?  It’s easy—just click this link and donate on my Network for Good page. It’s tax deductible. (Here’s the link again: )

I know there are many worthy charities asking for money this time of year. Any small amount you can give will help accelerate research for hundreds of ROS1ders worldwide who, like me, are dying for more treatment options.

Thank you for your support! 

Nominate a CURE #LungCancer Hero by June 30, 2021

Show your appreciation for an individual who goes above and beyond to make a difference in the lives of those affected by lung cancer. If you know a hero who has inspired change, exemplified compassion or brought newfound hope to you or someone you care for, share their story by submitting an essay nomination for the 2021 Lung Cancer Heroes® awards. This is only the second year this award has been offered.

Submit your nomination by June 30, 2021 here:

GRASP registration now open to #lungcancer patient advocates for #ASCO21 poster sessions

Hey Lung Cancer Advocates!

Are interested in discussing an ASCO poster with a lung cancer scientist?

The IASLC STARS program, KRAS Kickers, and LUNGevity have partnered with GRASP (Guiding Researchers and Advocates to Scientific Partnerships) to offer lung cancer poster reviews at ASCO 2021. GRASP is a grass-roots advocacy effort that started in the breast cancer community. 

In the GRASP format, a scientist discusses posters with a small group of patient advocates and an experienced research advocate. Virtual GRASP sessions will take place the week after the official ASCO meeting with six different sessions over the course of two days.

To take advantage of this opportunity for the 2021 ASCO Annual Meeting, please join GRASP (it’s free!) and then go to GRASP advocate registration to register one of the five lung cancer poster sessions on selected topics.  Please also consider signing up for one of the optional GRASP training sessions (May 26 and 27).

If you have any questions, please contact Julia Maues, patient advocate and cofounder of GRASP.

We look forward to seeing you at a poster session!

Image credits:  © GRASP 2021

#LCSM Chat Topic 6-May-2021: “The Hows and Whys of Cancer Research Advocacy”

Please join #LCSM Chat and other Twitter cancer hashtag communities as we discuss “The Hows and Whys of Cancer Research Advocacy” on Twitter Thursday, May 6th, at 5 pm Pacific (8 pm Eastern). Join us to learn how cancer research advocates bring value to research!

More info about the chat (including the five discussion topics) on the LCSM Chat website:

Learn how to participate in #LCSM Chat here:

Remember, the IASLC STARS Program is accepting applications for 2021 Patient Research Advocates through May 10! STARS aims to help lung cancer patient advocates evolve into research advocates.

8-Apr-2021 STAT Video Chat Event: What gene targeted therapies mean for patients with cancer

I’m excited to participate in the STAT News video chat “What gene targeted therapies mean for patients with cancer” on April 8, 2021 at 1:00 p.m. ET (10:00 a.m. PT) on the topic The discussion will include a great group of speakers:

  • Bonnie J. Addario, lung cancer survivor; co-founder and board chair, GO2 Foundation for Lung Cancer
  • Narjust Duma, M.D., assistant professor of medicine, thoracic oncology, University of Wisconsin Carbone Cancer Center
  • Janet Freeman-Daily, MS, Eng, co-founder and board chair, The ROS1ders; stage IV lung cancer survivor & research advocate
  • Laura A. Petrillo, M.D., palliative care physician, Massachusetts General Hospital and Harvard Medical School
  • Camille Hertzka, VP, head of oncology U.S. medical, AstraZeneca (sponsor speaker)
  • Eric Boodman, general assignment reporter, STAT (moderator)

You can register for FREE at this website to view the event live:

Patient participation in #NACLC20 virtual lung cancer conference

The virtual 2020 IASLC North American Conference on Lung Cancer (NACLC 2020) runs October 16-17. Patients will be providing special perspectives throughout the conference.

REGISTRATION IS FREE for all patients and caregivers. Register here:

Check out the full program here.

Don’t miss these two presentations by lung cancer patient research advocates on Saturday, October 17th:

Ivy Horowitz Elkins and Janet Freeman-Daily on “Patient Driven Research” in the Targeted Therapy session (9:50-10:45 am CT)

Jill Libles Feldman on “Adjuvant Treatment: What Does It Mean for Patients” in the Keynote session. (11:50 am -12:40 pm CT)