Original post is on The ROS1ders website
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.
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
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.
- Anna Pugh, LUNGevity Foundation Director of Public Policy Initiatives, at firstname.lastname@example.org or 240-454-3105 or
- Cindy Langhorne, Caring Ambassadors Lung Cancer Program Director at email@example.com 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.
Today the Centers for Medicare and Medicaid announced they will cover Next Generation Sequencing (NGS) for cancer! This is a major victory for all cancer patients.
As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences. On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.
Some reasons for cancer advocates to attend medical conferences are to:
- Learn more about cancer and treatment options for cancer
- Get details about new research
- Meet the top doctors who treat their type of cancer
- Support an advocacy organization’s outreach booth
- Network with other advocates, as well as clinicians and researchers
- Share an advocate’s perspective on a specific topic, sometimes as an invited speaker
As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?
Tools exist to help advocates navigate cancer conferences and understand the content they will see:
- How to Navigate a Scientific Meeting by American Association for Cancer Research (AACR)
- Advocate Resources by Research Advocacy Network (RAN)
- Being a Cancer Advocate by American Society for Clinical Oncology (ASCO)
If you know of other resources, please share them in the comments on this page or in the chat.
Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:
- AACR’s Scientist↔Survivor Program
Participants receive travel grants and participate in special educational programs at cancer research meetings.
- ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
- RAN’s Focus on Research Scholar Program
Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
- International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.
Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:
- T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals? To the conference?
- T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
- T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
- T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
- T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?
We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”
I hope you’ll support me and the Global ROS1 Initiative as we strive to accelerate research, find better treatments and hopefully cure ROS1 positive (ROS1+) cancer — which I have. Here’s a National Cancer Institute blog about the Initiative. This project is very dear to me.
If you’ve been meaning to contribute, or you have friends or family you’ve been meaning to ask to donate, do it today, or sometime before the end of the year! The recently-signed US tax law revisions may affect whether you can claim a tax deduction for your charitable contributions after January 1, 2018.
GO TO MY FUNDRAISER BY CLICKING HERE:
Janet Freeman-Daily’s ROS1 Research Fundraiser
Thanks for supporting ROS1+ cancer research—you could help save someone’s life someday. For those who want more detail about the project and fundraiser, read on!
Why research ROS1 Cancer?
My type of cancer is driven by an alteration in the ROS1 gene. Medical research has made it possible for me to live well with aggressive, metastatic ROS1+ lung cancer since 2011. However, ROS1+ cancer is uncommon (only 1%-2% of lung and other cancers) and not well understood. Only one approved ROS1-targeted drug exists, and patients eventually develop resistance to it. Little is known about how this disease begins, progresses and develops resistance to treatment.
Is my donation tax-deductible?
This fundraiser directs funds to the Bonnie J. Addario Lung Cancer Foundation (ALCF), a 501(c)(3) nonprofit (view their Guidestar page); monies are placed in an ALCF account designated for our ROS1 project. Donations are tax deductible under US tax laws.
What is the Global ROS1 Initiative?
I helped to create the Global ROS1 Initiative, a unique collaboration between ROS1+ patients, caregivers, researchers, clinicians, and industry. This is the first-ever effort initiated by patients to focus on cancer driven by a single genomic alteration anywhere in the body. We are initially funding projects in the US (takes time to learn about international research collaboration), but our patient group is global, with patients in 19 countries to date.
How did the Global ROS1 Initiative get started?
Who are the Global ROS1 Initiative partners?
- The ROS1ders (patients and caregivers dealing with ROS1+ cancers)
- Bonnie J. Addario Lung Cancer Foundation
- Addario Lung Cancer Medical Institute (ALCMI)
- Dr. Robert Doebele and Dr. Ross Camidge, University of Colorado Comprehensive Cancer Center
- Dr. Christine Lovly, Vanderbilt-Ingram Cancer Center
- Dr. Ignatious Ou, University of Colorado, Irvine Chao Family Comprehensive Cancer Center
- Dr. Manali Patel, Stanford University
- Dr. Alice Shaw, Massachusetts General Hospital
- Champions Oncology (specialists in making cancer models)
What research will the Global ROS1 Initiative fund?
Funds in the ROS1-designated account will be distributed by a panel of Global ROS1 Initiative representatives (including patients) to our projects. We are funding two projects at present:
- A survey conducted through Stanford University, which collects personal and health history data on ROS1ders. Researchers will study the data to look for possible causes of ROS1+ cancer, and evaluate effectiveness and sequence of treatment options.
- The ROS1 Cancer Model project, which is creating new models of ROS1+ cancer for drug development and research into our disease. In early 2017, only a few ROS1+ models existed, and they did not represent all the dozens of variations of ROS1+ cancer. In this project, we ROS1ders agree to donate our cancer tumor cells collected in the normal course of care to create cell lines and mouse models that researchers can use to study our disease.
How will the Global ROS1 Initiative accelerate research?
As part of our patient-driven approach, we aim to make our data and models widely available to the cancer research community instead of holding it in silos at individual institutions. We will be creating a biorepository of our specimens with annotated patient data, including making use of patient registries (like the Lung Cancer Registry) that share de-identified data will validated researchers. The cancer models we create will be distributed at minimal cost to researchers.
The ROS1ders also help spread vetted information about ROS1+ cancers to patients, caregivers, and the public. We donate our time to maintain and write content for the ros1cancer.com website which shares up-to-date information about ROS1+ cancer, names of ROS1+ experts, known treatments and their approval status globally, and available clinical trials focused on ROS1+ cancers. We also administer a private Facebook group in which ROS1+ patients and caregivers share their experiences, news about our cancer, and tips for living with our disease (more info on joining this group is here).