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.

Submit Your 2023 Cancer Care Team Award Nomination Today!

The IASLC Cancer Care Team Award honors multidisciplinary teams, as nominated by the patients they serve. Exceptional care teams offer the patient seamless and informed communication, as well as an individualized treatment plan based on not just the patient’s needs, but the patient’s wishes. The Cancer Care Team Award aims to highlight this kind of worldwide, outstanding care.

The IASLC Cancer Care Team Award was established in memory of Marilyn Holman, who passed away from lung cancer in 2016. By recognizing Cancer Care Teams across the globe, we hope to spread awareness and speak to the outstanding care that is possible for all lung cancer patients, from the time of diagnosis through treatment.

The IASLC invites and encourages individual patients with lung cancer and/or their caregivers to nominate a multidisciplinary care team who they feel provided exceptional care. Only IASLC Members are eligible to submit nominations for the Cancer Care Team Award. If you are not yet a member, CLICK HERE for information on how to join. IASLC Membership is complimentary for patients and their family members and caregivers. The deadline to submit nominations is April 26, 2023. An international panel will choose one winning team from each of the four regions – North America, Latin America, Europe, and Asia/ROW. Winning teams will be announced during the 2023 World Conference on Lung Cancer in Singapore (September 9-12, 2023).

Submit your nomination here.

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.

Metastatic #lungcancer — effective targeted therapy for 10 years and counting!

Lung cancer research gives patients hope, time with loved ones, and better quality of life. Ten years ago today, I entered a targeted therapy clinical trial for my ROS1+ lung cancer, taking an oral drug called crizotinib (trade name Xalkori). I’m still taking it (it’s now approved by the FDA and in many other countries) and have had no evidence of disease since I started it. Pretty amazing, since I had been given an expiration date of 2 years at the outside for my metastatic non-small cell lung cancer.

In honor of Lung Cancer Awareness Month, please donate to lung cancer research. The ROS1ders will be offering research grants next year! Any amount will help.


Achievement Unlocked: cancer patient research advocate as co-first author of journal article

Proud to have co-authored this print article about expert patient contributions as educators, advocates, and research partners! Thanks to Collaboration for Outcomes using Social Media in Oncology (COSMO) for the opportunity.

You can read the full article online here:

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.”

Honoring #LungCancer Patient Advocates on #WLCD22

Lung cancer patient advocates share purpose, laughter, and tears. On #World Lung Cancer Day, I celebrate efforts to improve outcomes & quality of life for people living with lung cancer. Most of us have/had lung cancer. Many have died. Still, we persist because … we see how we make a difference. #LCSM #WLCD

Below I’ve listed several large, established nonprofit organizations engaged in some aspect of lung cancer patient advocacy. All provide medically validated information about lung cancer, offer patient supports, and/or fund lung cancer research. Many individual patients (like me) and smaller nonprofits are also engaged in aspects of lung cancer patient advocacy.

American Lung Association

Global Lung Cancer Coalition (GLCC) (includes member organizations around the globe)

GO2 Foundation for Lung Cancer

Lung Cancer Canada

Lung Cancer Europe (includes member organizations in Europe)

Lung Cancer Foundation of America

Lung Cancer Research Foundation

LUNGevity Foundation

Science over Safety:  Did the #ASCO22 Community Fail Cancer Patients?

In early June, the American Society of Clinical Oncology held its 2022 Annual Meeting (#ASCO22) in Chicago. This was the first in-person annual meeting since the pandemic began.  While attendance was smaller than usual, McCormick Place (the largest convention center in North America) still hosted 30,000 oncology-related clinicians, researchers, healthcare professionals, patients, and advocates from all over the world. 

To address the risk of COVID-19 transmission, attendees were required to prove they were fully vaccinated against COVID-19. Attendees also were required to have a negative COVID-19 test, and COVID tests were readily available during the conference. Masking was recommended – “ASCO expects all attendees to be masked indoors at our meeting when not eating, drinking, or presenting.”

I am a cancer research advocate living with incurable lung cancer for over eleven years. I started attending ASCO Annual Meetings in 2014. It’s wonderful to gather with other cancer patient advocates, network with oncology professionals, and learn about the newest research for my disease.  I would have loved to attend in person this year, but I didn’t.  I chose to attend virtually during the pandemic because my radiation-scarred lungs are prone to infection (I’ve had pneumonia more than once since my diagnosis), and lung cancer patients are at increased risk of death from COVID-19.  However, I had a window into the happenings at McCormick Place via the #ASCO22 hashtag on Twitter, as well as texts and messaging from friends who were there.

Many attendees tweeted pictures of colleagues reunited after a long, trying absence. The pandemic has been especially tough on medical professionals.  They needed the joy that reconnection brings.  I don’t begrudge them that.

However, those images generated a different emotion for me. After speaking with several friends in the lung cancer patient advocate community, I’ve learned I’m not alone in my feelings.

I’m pissed that the ASCO community appears to have given so little value to the safety of people who have cancer. Here’s why.


COVID-19 transmission was deemed high in Chicago by the city’s COVID Dashboard in the weeks leading up to #ASCO22.  Omicron variants were on the rise and deemed very transmissible. With tens of thousands in attendance, chances of encountering someone infected with COVID were NOT low. Although omicron symptoms seem generally less severe, people are still dying from it–especially people with underlying conditions, like cancer. Others have lingering side effects.

Several medical professionals who attended the smaller 2022 American Association of Cancer Research (#AACR22) Annual Meeting in New Orleans last April tested positive for COVID-19 a few days after the meeting.  Masks were not required at AACR, and few masks were seen in surrounding hotels, restaurants, and public transportation. By the start date of the much larger ASCO meeting two months later, community transmission of COVID was much higher.  The likelihood someone at #ASCO22 would become infected was a virtual given.


While ASCO expected masks to be worn, masking was not required nor enforced.  On the second day of the conference, a tweet observed that perhaps 50% of attendees were wearing masks.  Other tweets showed some attendees gathered for selfies and group pictures in session rooms and hallways wearing no masks.  Others reported people at ancillary events and hosted parties that included food were frequently unmasked.


ASCO 2022 required a COVID-19 test “within 48 hours of the time they entered any of the session rooms or exhibit hall.”  This allowed international attendees with long flights to test after they arrived at McCormick Place.  However, testing relied on the honor system:  no one verified nor recorded test results.  Both rapid and PCR tests were readily available throughout the conference for those who wished to test again, but no system was available for posting results.  One doctor who planned to attend tested negative for COVID the day before travel.  To be extra safe, they tested just before leaving for the airport.  That second test was positive. As a result, she chose not to attend the conference.

It’s unlikely everyone was equally diligent with testing. How many people arrived at the conference unknowingly positive?


Oncology is a medical field that’s evidence based and highly dependent on data.  Good results demonstrated in clinical trial data are essential to getting new cancer drugs approved by regulators and available to patients.  One would think oncology professionals would be the first to follow the data when it comes to protecting their patients from COVID-19. People who have cancer expect our doctors, nurses, and other clinical professionals to set and maintain a high bar.

So many patient advocates typically attend ASCO that the meeting offers a Patient Advocate Lounge as well as patient-focused programs. Many of these advocates have active cancer. Before the meeting, both patient advocates and doctors pleaded with ASCO to make masking a requirement to reduce the risk of spreading of COVID to patients who attended ASCO, and to healthcare providers at ASCO who would be seeing patients in clinic when they returned home. ASCO refused. The letter has since been taken down, but is mentioned in this article.

Lung cancer patient and research advocate Jill Feldman had the honor of being invited to speak in an ASCO education session. Including patients on ASCO panels is still rare, and Jill takes the responsibility of representing the patient voice seriously.  She chose to forego in-person ASCO except for the session in which she was speaking because she had significant COVID anxiety — she’d been hospitalized for the virus last December. She lives near Chicago, so she didn’t have to fly or stay in a hotel.  She wore an N95 mask, except for her time on the podium.  A tweeted picture of the audience in her session (since deleted) showed many faces and few masks. Despite Jill sharing her anxiety about possible COVID exposure at the end of her talk, some ASCO attendees approached her afterwards to chat without wearing masks. 

On the day after the five-day meeting ended, two tweets by Tatiana Prowell, MD, reported ASCO22 attendees were already testing positive for COVID.

I am grateful for the oncology professionals who are caring for me.  I am glad they feel renewed by their experience at #ASCO22. I appreciate those who were careful to stay masked while at the conference.

Still, I am angry about the apparent disregard for people who have cancer that was demonstrated by ASCO as a community and the oncology profession as a whole. Many #ASCO22 attendees were unmasked while hugging, sitting shoulder-to-shoulder in sessions, chatting while in noisy food courts, catching up over Exhibit Hall lattes, and networking at after-hours parties.  I wonder how many of them (or the people they were near) were in clinic the next day sharing their ASCO joy and COVID with immunocompromised patients.

A fellow lung cancer advocate and virtual #ASCO22 attendee tweeted her decision not to attend in person.  Her choice was widely applauded: in five days, her tweet received almost 2000 likes, 200+ retweets, and dozens of “thank you” responses.

C’mon, ASCO community, you can do better.  Cancer patients expect – no, REQUIRE – you to set a high bar.  Step up.

Applying the rule of law to pregnancy

The rule of law should be equally applied to all, don’t you think? So, if the only reason to have sex is to create babies and carry them to term so they can have life, liberty, and the pursuit of happiness, and any pregnant person MUST carry the pregnancy to term no matter the impact on the mother’s life,

then …

We must ensure all potential parents are at least as prepared for parenting as adoptive parents are required to be.

These guidelines should help.

1. All males must be sterilized at puberty. No pregnancy can occur without male input.

2. A male can have sterilization reversed ONLY when they prove they:

  • want to raise children,
  • have acceptable parenting skills, and
  • are able to support children in an acceptable home environment.

3. A male may only engage in sex with a person who:

  • explicitly states in writing that they are willing and able to bear and raise a child with that specific male, and
  • can prove that they are able to support a child should something happen to the male.

4. Any male who violates these rules will be:

  • immediately and permanently sterilized,
  • jailed for 9 months while wearing a pregnancy suit,
  • required to work in the jail’s diaper service for another 4 years,
  • for the next 30 years after release from jail, required to work in a minimum-wage job while paying a monthly “standardized offspring support fee” calculated to equal 50% of food, housing, education, daycare, and medical bills for a child with a disabling condition.

I wonder how many men that would leave to run the country?