Want to be a #lungcancer patient research advocate? Inaugural @IASLC STARS program application period is open!

    • Have you or a family member been diagnosed with lung cancer?
      Are you already active in providing lung cancer support and/or education to others?
      Do you want to ramp up your advocacy work and learn more about the science of lung cancer research?

    THEN …

    Apply for the brand-new STARS (Supportive Training for Advocate in Research and Science) program!  STARS was developed by the IASLC (International Association for the Study of Lung Cancer) in collaboration with international lung cancer patient research advocates and advocacy nonprofits.

    Those accepted in the program will be assigned a mentor from their own country, meet and learn lung cancer science from researchers, develop science communication skills, and attend the World Conference on Lung Cancer (WCLC) in Barcelona, Spain in September 2019.

    To learn more and to find the online application, click here:
    https://www.iaslc.org/supportive-training-advocates-research-and-science-stars

    The application period is open from March 8 to May 1, 2019. Hope you’ll apply!

    Ah, the life of a research advocate …

    Life as a lung cancer research advocate can require a lot of travel. This week I’m in Washington DC for two meetings.

    Monday I participated as the sole patient advocate in the National Cancer Institute’s Small Cell Lung Cancer (SCLC) working group meeting, along with some of the top US researchers in this disease. The meeting will provide fodder for the NCI’s report to Congress about the Recalcitrant Cancers Act.

    Thursday I’ll be one of several patient advocates at the National Institutes of Medicine for a meeting on data sharing, along with medical institutions, pharma, and healthcare payers. Data sharing in the electronic age involves more than just who can see your medical records. We patients and family members have already participated in several phone calls in preparation for this meeting. It will be interesting to hear what the other stakeholder groups think are the main barriers to data sharing, and what we should do about them.

    In between, I’m trying to get caught up on expense reports and writing projects while adjusting to a new time zone. I hope my inputs make a enough difference for patients to make the travel worthwhile.

    Join me for @TheALCF Lung Cancer Living Room 1/15 5:30 PM Pacific

    Please join lung cancer patients/survivors Teri Kennedy, Jeff Julian, Don Stranathan, Andy Trahan, and me, along with Dr. Amy Moore (Director of Science and Research, Bonnie J. Addario Lung Cancer Foundation, also know as ALCF) Tuesday January 15, 2019 5:30-7:30 pm Pacific Time for a discussion on “Navigating the Latest Advances in Lung Cancer Treatment.” I’ll have an opportunity to talk about The ROS1ders and the research project we created  in partnership with ALCF.

    Join us in person in San Carlos, California, watch live on Facebook, or watch later on YouTube or in the Living Room Library.

     

    My #WCLC2018 Presentations

    I’ll be attending the annual World Conference on Lung Cancer (#WCLC2018) in Toronto Canada later this month.  For those who are interested, I will be making two presentations.  Hope I’ll see you in the audience!

    OA10 – Right Patient, Right Target & Right Drug – Novel Treatments and Research Partnerships
    Tuesday 9/25 10:00 AM to 12:00 PM
    Oral Abstract Session in the Targeted Therapy Track
    Moderated by Howard (Jack) West, Jyoti Patel

    ES05 – Collaboration Between Stakeholders to Improve Lung Cancer Research 
    Tuesday 9/25 15:15 PM to 16:45 PM
    Education Session in Advocacy Track
    Moderated by Bonnie Addario, Toshiyuki Sawa

    Call to Action — Lung Cancer Patients & Doctors in Oregon

     

    pills in dollar sign

    Are you from Oregon? You may be losing a very important tool to help you survive cancer. Please stand up to keep providing Medicaid coverage of FDA approved comprehensive genomic sequencing. Many lives depend on it!

    OREGON CALL TO ACTION!
    The state of Oregon Health Authority Health Evidence Review Commission (HERC) recently released proposed guidance to not provide coverage for the use of FDA-Approved Next Generation Sequencing (NGS) tests for cancer patients in the state with Medicaid.

    LUNGevity Foundation and Caring Ambassadors are seeking volunteers–both lung cancer survivors and health care professionals–who live in the state of Oregon, to provide testimony at a public meeting on this issue scheduled for 1:00pm-4:00pm on  September 27, 2018 in Wilsonville, Oregon. Ideal testimony would be provided by survivors who have received NGS, or other comprehensive biomarker testing, to guide their treatment and by health care professionals who order, consult, or care for patients who have received NGS, or other comprehensive biomarker testing.For more information or to volunteer, please contact:

    • Anna Pugh, LUNGevity Foundation Director of Public Policy Initiatives, at agpugh@lungevity.org or 240-454-3105 or
    • Cindy Langhorne, Caring Ambassadors Lung Cancer Program Director at cindy@caringambassadors.org or 503-632-9032 ext. 1.

    A copy of the comments submitted by LUNGevity Foundation to the HERC can be found here.

    Thanks to Matt Ellefson at SURVIVEiT! for helping to make this need known.

    A call for more research on “chemobrain”

    Image credit: Microsoft

    The journal Trends in Neurosciences published an article June 12, 2018 calling for more research into cognitive impairment caused by cancer treatment.    Unfortunately, it’s behind a paywall.  To get an overview of the content,  read Cancer Today’s July 18, 2018 article “What is ‘Chemobrain’?” , which is an interview the article’s lead author, Todd Horowitz of the National Cancer Institute.