NikoleV

Only 16% of #lungcancer diagnoses are detected early. We’re going to explore early detection and screen alongside lung cancer survivors, clinicians, policy makers and other experts that will dive deep into the medical advancements that are transforming lung cancer into a curable and treatable disease. Join us on 7/2 for the If You Have Lungs, You Can Get Lung Cancer, A Community Conversation on Lung Cancer Workshop: https://healcollaborative.org/event/pt-2-if-you-have-lungs-you-can-get-lung-cancer/

Register, view the agenda, FAQ's and more here: https://lungevity.swoogo.com/ilcsc2022 ILCSC 2022 — July 15-16 Learn, connect, and find hope in lung cancer The International Lung Cancer Survivorship Conference (ILCSC) is a virtual educational conference for people with lung cancer, caregivers, and advocates. The conference provides opportunities for attendees to hear from world-renowned researchers on the latest treatments, learn about ways to manage your lung cancer and treatment journey, and find hope in today’s scientific progress. ILCSC will give you a better understanding of the science behind your disease so you can collaborate more effectively with your healthcare team and be a more active participant in your healthcare decisions. The conference is packed with sessions bringing you the latest and most pertinent information and resources, including educational presentations by clinicians, healthcare providers, and researchers, expert panels, and dedicated breakout sessions for special interests.

Join us TODAY at our Tuesday Virtual Meetup! Guest Speaker Julie Larson, LCSW will hold an honest conversation about survivors' guilt and will be answering your questions. Advance registration is required. https://us06web.zoom.us/meeting/register/tZcscO2gqzwsEtBWZsk5XrT-tANqUNGm7DHo

Sharing from Health Literacy Media- We need your help to create easy-to-understand materials about the stages of non-small cell lung cancer (NSCLC)! To see if you qualify and sign up, click here to answer a few questions: https://bit.ly/HLM-3S2

We need your help to create easy-to-understand materials about small cell lung cancer (SCLC)! To see if you qualify and sign up, click here to answer a few questions: https://bit.ly/HLM-3S3

Sharing - Health Literacy Media We need your help to create easy-to-understand materials about small cell lung cancer (SCLC)! To see if you qualify and sign up, click here to answer a few questions: https://bit.ly/HLM-3S3

Contact Katie Tith with any questions about this study: ktith@bdtx.com BDTX-1535 is an orally available, highly potent, selective, irreversible inhibitor of allosteric epidermal growth factor receptor (EGFR) alterations, including amplification, mutations, and splice variants which have been identified in glioblastoma (GBM) and mutations in non-small cell lung cancer (NSCLC) associated with intrinsic or acquired resistance. The open label, multicenter will assess the safety, tolerability, pharmacokinetics, pharmacodynamics and preliminary anti-tumor activity of BDTX-1535 in patients with GBM harboring EGFR alterations and NSCLC with EGFR mutations of intrinsic or acquired resistance who have failed standard treatment. Dose escalation cohorts will be used to determine the maximum tolerated dose and recommended phase 2 dose of BDTX-1535 oral administration. Patients with NSCLC must meet all of the following inclusion criteria, in addition to the common inclusion criteria applicable for all patients: • Histologically or cytologically confirmed NSCLC, without small cell lung cancer transformation. • Locally advanced or metastatic disease, with or without CNS metastases. • Disease may be evaluable or measurable for dose escalation cohorts but must be measurable by RECIST v1.1 criteria for enrollment on the disease specific expansion cohorts. • Disease progression following or intolerance of standard of care: - NSCLC with uncommon EGFR mutations (eg, G719X), following standard of care therapy with an EGFR inhibitor. - NSCLC with acquired resistance EGFR mutation (eg, C797S), following a 3rd generation EGFR inhibitor in the 1st line setting (in the absence of concurrent T790M). • EGFR mutations identified by NGS in the absence of other known resistance mutations (eg, T790M, MET)

Great blog, Lily! Thanks for sharing!

Sharing Advocacy Opportunity: Research opportunity for Non-Small Cell Lung Cancer (NSCLC) patients living in Canada. This is a 90 min web-assisted phone interview (and homework), and the compensation is CAD 280. Please sign up at the link below to receive an email invite to the survey. https://rarepatientvoice.com/Lungevity/

Follow this link to find your senators and personalize your letter: https://www.lungevity.org/blogs/take-action-tell-your-senators-what-lung-cancer-research-means-to-you Take Action! Tell Your Senators What Lung Cancer Research Means to You Posted on May 10, 2022 LUNGevity Foundation The lung cancer community has a unique and urgent opportunity to influence the future of lung cancer research funding in Congress. The Lung Cancer Research Program (LCRP), part of the Congressionally Directed Medical Research Program (CDMRP) within the Department of Defense, is an important source of federal funding for lung cancer research. LUNGevity and over 20 other patient advocacy groups are coming together to ask Congress to increase funding for the LCRP. Together we are asking for $60 million for the LCRP in the next fiscal year. Why $60 Million? Seventy percent of high-quality research proposals seeking funding from the LCRP in Fiscal Year 2021 were rejected due to a lack of available funds. Lung cancer advocates have calculated that funding all of these promising and highly rigorous projects would require a budget of $60 million for the LCRP. If approved, this would be a $40 million increase. Similar large increases have happened before: the budget for the Ovarian Cancer Research Program grew by $15 million in 2020, with an additional $10 million increase in 2022. These increases have been achieved thanks to the impact of vocal patient advocates. How You Can Help The LUNGevity Action Network hosts an easy-to-use platform with a built-in letter template, making it simple to reach out to policymakers to share personal stories and experiences in order to explain why we need more funding for lung cancer research. The letter asks senators to sign a forthcoming Dear Colleague letter from Senator Jack Reed of Rhode Island (one of the main supporters of this effort in Congress), requesting $60 million for the Lung Cancer Research Program in the Fiscal Year 2023 Department of Defense appropriations bill. Click here to find your senators and personalize your letter. The deadline for letter submissions is May 12th, with a full vote expected to take place in July or August. Additional Information For more on the CDMRP and LCRP, a webinar hosted by the LUNGevity Action Network on this issue is available here. The webinar features expert speakers Mark Vieth, Coordinator of the Defense Health Research Consortium, and Jill Morningstar, a caregiver and former congressional aide. And be sure to join the LUNGevity Action Network for the latest updates and Action Alerts!

https://www.lungevity.org/news/media-releases/lungevity-names-maisha-standifer-phd-mph-lungevity-community-scholar-in LUNGevity Names Maisha Standifer, PhD, MPH, LUNGevity Community Scholar-in-Residence In a consultative role, Dr. Standifer will aid in the development and cultivation of new research partners FOR IMMEDIATE RELEASE Media Contact Linda Wenger lwenger@LUNGevity.org (973) 449-3214 WASHINGTON, DC (April 27, 2022) — LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, welcomes Maisha Standifer, PhD, MPH, as its first Community Scholar-in-Residence. In this new position, Dr. Standifer will help develop relationships with organizational, academic, and community-based research partners and will also be instrumental in executing LUNGevity’s Annual Lung Cancer Health Equity Roundtable. Dr. Standifer is currently the Director of Health Policy in the Satcher Health Leadership Institute at Morehouse School of Medicine. She is also a co-investigator on multiple federally funded studies and a lecturer at Morehouse College and Emory University. In addition, as a lecturer at Morehouse College and Emory University, she serves as a public health policy analyst for several ongoing research studies on ethnic minority status as a social determinant of health for COVID-19 funded by the CDC and Kessler Foundation. Before her role at Morehouse, she worked at the James A. Haley Veterans’ Hospital, where she was a research specialist, a program administrator, and a study investigator for research and development services. “With 15 years of examining health inequalities both globally and domestically, Maisha will be a welcome addition to LUNGevity,” explained Andrea Ferris, the foundation’s president and CEO. “We look forward to benefiting from her leadership and expertise as we expand our efforts to ensure that all individuals with lung cancer benefit from the latest scientific advances. Dr. Standifer received her BA in sociology at Spelman College, her MPH from Rollins School of Public Health at Emory University, and a PhD in applied anthropology with a concentration in medical anthropology from the University of South Florida. About LUNGevity LUNGevity Foundation is the nation’s leading lung cancer organization focused on improving outcomes for people with lung cancer through research, policy initiatives, education, support, and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live longer and better lives. Comprehensive resources include a medically vetted and patient-centric website, a toll-free HELPLine for support, the International Lung Cancer Survivorship Conference, and an easy-to-use Clinical Trial Finder, among other tools. All of these programs are to achieve our vision—a world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization. Please visit LUNGevity.org to learn more. About Lung Cancer in the US About 1 in 17 Americans will be diagnosed with lung cancer in their lifetime. More than 236,000 people in the US will be diagnosed with lung cancer this year. About 60%-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers. Lung cancer takes more lives than the next two deadliest cancers (colorectal and pancreatic) combined. Only 23% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it’s caught before it spreads, the chance of 5-year survival improves dramatically.

Progress in Targeting MET Drivers in Advanced NSCLC Posted on March 4, 2022 Juhi Kunde, MA, LUNGevity Science WriterDr. Edward Garon MET is a gene that encodes for a MET protein. It is an important signaling protein known to play many different important roles, from the development of embryos to wound healing in adults. However, when specific MET gene alterations occur, they can also lead to the development of non-small cell lung cancer (NSCLC). Among patients with NSCLC, approximately 3%-4% have these specific MET alterations. Researchers have developed treatments that target these altered MET pathways and shrink tumors. Two of these targeted therapies have been approved by the US Food and Drug Administration (FDA). LUNGevity Foundation spoke with Edward Garon, MD, director of thoracic oncology at the UCLA Jonsson Comprehensive Cancer Center and member of LUNGevity’s Scientific Advisory Board, to learn more about MET targeted therapies and the exciting future of MET-based treatments. Read more of the blog here: https://www.lungevity.org/blogs/progress-in-targeting-met-drivers-in-advanced-nsclc

https://www.lungevity.org/news/media-releases/lungevity-launches-new-egfr-patient-gateway https://egfr.lungevity.org/ LUNGevity Launches New EGFR Patient Gateway The specialized resource offers patients with EGFR-positive lung cancer and their caregivers access to informative webinars, the latest scientific news, and a supportive community FOR IMMEDIATE RELEASE Media Contact Linda Wenger lwenger@LUNGevity.org (973) 449-3214 WASHINGTON, DC (May 4, 2022) — LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, has launched the EGFR Lung Cancer Patient Gateway. This new resource joins a suite of Patient Gateways for lung cancer survivors that present relevant information tailored to their specific subtype. The EGFR Patient Gateway will allow patients with EGFR (epidermal growth factor receptor) gene mutations or alterations to more easily locate specialists and resources as well as treatment information and the ability to connect with a community of fellow survivors and their caregivers. EGFR mutations (not including the more rare EGFR exon 20 insertions) affect about 15% of patients with non-small-cell lung cancer (NSCLC), particularly women, nonsmokers, and people of East Asian descent. The new Gateway will provide a dedicated space to discuss the unique challenges of an EGFR-positive lung cancer diagnosis, such as acquired drug resistance, meaning that treatments can stop working over time. The EGFR Patient Gateway is a user-friendly and easily accessible information portal that offers the latest medical updates and crucial resources for people living with EGFR-positive lung cancer. The Gateway, available at egfr.lungevity.org, will provide a single comprehensive place for people living with lung cancer to learn about EGFR alterations, find a specialist based on individualized search criteria, join a variety of EGFR patient communities, explore clinical trial options, and read up-to-the-minute, curated news and trends. Visitors to the individual Gateways can view expert webinars and blogs, as well as patient and caregiver stories, and sign up for newsletters with ways to live well with lung cancer and to get the latest scientific news. “Targeted therapies have often been at the forefront of advances in lung cancer research over the past decade, and people living with EGFR-positive lung cancer rely on advancements in science to meet their evolving treatment needs,” said Amy Moore, PhD, LUNGevity’s Vice President of Global Engagement and Patient Partnerships. “Patients, caregivers, and physicians can all turn to this interactive resource for up-to-date, curated information about the latest in research and new drug approvals that may benefit them.” The EGFR Patient Gateway joins the ALK, KRAS, and NSCLC platforms on gateway.lungevity.org. Other Gateways to come in 2022 will include a dedicated emphasis on small cell lung cancer and on rare mutations and fusions (such as ROS1, MET, NTRK, BRAF, and RET). The EGFR Patient Gateway is supported by generous sponsorships from AstraZeneca, Blueprint Medicines, Johnson & Johnson, and Takeda Oncology. About LUNGevity Foundation LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer through research, education, policy initiatives, and support and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live better and longer lives. Comprehensive resources include a medically vetted and patient-centric website, a toll-free HELPLine for support, the International Lung Cancer Survivorship Conference, and an easy-to-use Clinical Trial Finder, among other tools. All of these programs are to achieve our vision—a world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization. About Lung Cancer in the US About 1 in 17 Americans will be diagnosed with lung cancer in their lifetime. More than 236,000 people in the US will be diagnosed with lung cancer this year. About 60%-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers. Lung cancer takes more lives in the United States than the next two deadliest cancers (colorectal and pancreatic) combined. Only about 23% of all people diagnosed with lung cancer in the United States will survive 5 years or more, BUT if it is caught before it spreads, the chance of 5-year survival improves dramatically. Please visit LUNGevity.org to learn more. About EGFR The EGFR (epidermal growth factor receptor) biomarker is a mutation in the EGFR gene that causes cells to grow abnormally. EGFR occurs naturally on the surface of healthy cells and signals them to grow. When the gene is mutated, it creates too much protein, causing cells to grow out of control and become cancerous. EGFR mutations are not inherited at birth; instead, they are acquired and can occur during a person’s lifespan.

KRAS: How It Started vs. How It’s Going Posted on April 21, 2022 Dr. Amy Moore and Dr. Upal Basu Roy On May 28, 2021, the United States Food & Drug Administration (FDA) approved sotorasib as the first targeted therapy for patients with KRAS G12C-positive non-small cell lung cancer (NSCLC). Both researchers and patients celebrated this historic breakthrough, which had been a goal since discovering the KRAS oncogene 40 years ago. KRAS is a leading driver mutation in various forms of cancer. Still, targeting KRAS had failed for nearly four decades, leading many to believe that it was “undruggable.” In the nearly one year since this first FDA approval, advances in the KRAS space have continued to grow rapidly. Here we reflect on the past year and look into our crystal ball to predict where this field is going. Read more of the blog here: https://www.lungevity.org/blogs/kras-how-it-started-vs-how-it’s-going

Our friends with Lung Cancer in Motion study are still looking for participants. Take a look and share! For more information or to be screened today, please contact Marie Ortloff at L&E Research: (877) 617-8662 recruitment@leresearch.com

Hi Jane! LUNGevity has caregiver mentors that we can match you with for one on one support by email and/or phone. Would you like to be matched with someone through our LifeLine program? Please let me know if I can help find the support you are looking for. Best Regards, Nikole www.lungevity.org/lifeline

Join our team! We are currently seeking survivors and caregivers to join our support team. If you have a few hours a week to provide support and friendship to others through email and/or phone, please sign up at the link below. www.lungevity.org/lifeline

Hi all, We have a 77 year old female looking for someone to talk to who has been diagnosed with SCLC. She does not mind if the support mentor is male or female. She just needs some support and encouragement from someone with the same diagnosis. Please let me know if you are willing to offer her an ear to listen. Thank you in advance. Best Regards, Nikole Support and Advocacy Coordinator nventrca@lungevity.org

Texas and surrounding area LC Survivors! You're invited to attend the 2015 Dallas HOPE Summit! Register to reserve your spot today, registration is FREE. http://events.lungevity.org/site/Calendar?id=100821&view=Detail Dallas HOPE Summit 2015 Embassy Suites DFW South 4650 West Airport Freeway Irving, TX 75062 Friday, February 6, 2015 - Saturday, February 7, 2015 The LUNGevity HOPE Summit is a conference for lung cancer survivors. A survivor is anyone who has ever been diagnosed with lunch cancer of any stage, or in or out of active treatment. All conference sessions, speakers, and meals during the conference will be provided to all participants. The Welcome Reception and Regional HOPE Summit are free for lung cancer survivors, however space is limited and registration is required for all those who attend. This will be our second regional HOPE Summit in the Dallas area. Participants can attend this regional summit to connect with cancer experts, survivors and caregivers in the community to become inspired and informed about lung cancer and local resources.

We have been asked to recruit for two advocacy opportunities (documentaries) for lung cancer survivors. Here is the criteria for each opportunity- if you are interested please email kbrown@lungevity.org for more information. #1 • White • Male • 50-70 yrs. • Squamous • Currently being treated, or post-progression (i.e. “after the cancer got worse”); Relevant experiences to discuss. #2 • Has recently progressed to 2nd line. • Is active (i.e. a PS 0-1) • Does not have any oncogenic drivers (i.e. EGFR or ALK mutations). • Is extremely motivated to live as long as possible. • Is either within Indianapolis or the surrounding states if possible. • Is willing to travel. • Is willing to share their story and speak in front of a large audience. • Is willing to allow a camera crew to videotape parts of their life once or twice a week for six weeks beginning in October or November. • Is willing to use a handheld camcorder and direct their family members to use a handheld camcorder to videotape personal and family events during their journey. • Believes that more time is valuable to them even if it is six weeks of extra time.

2014 LUNGevity HOPE Summit - Don't miss it, register today!! Friday, May 2, 2014 - Sunday, May 4, 2014 Keybridge Marriott Arlington, VA www.lungevity.org/dchope HOPE Summit is a conference for lung cancer survivors. All conference sessions, speakers, access to exhibits, and meals during the conference will be provided to all participants at NO COST beyond the $50 application fee. Welcome Reception: Friday, May 2, 2014, 7:30 pm, Keybridge Marriott Conference: Saturday, May 3, 2014, 8:00 am - 5:00 pm, Keybridge Marriott (Optional Dinner/Offsite Activity TBA) Sunday, May 4, 2014, 8:00 am - 2:00 pm Application Fee: There is a $50 application fee per person to hold your place at Hope Summit. This includes the sessions, materials, and meals. Email confirmation will be sent from hope@lungevity.org. Be sure to add this email address to your safe senders list. If you are not accepted to attend the 2014 Summit your application fee will be REFUNDED and you will be invited to add your name to the 2015 waitlist. Cancellation Policy: After April 1, refunds will only be available to those who were not accepted to attend the 2014 Summit. AGENDA TOPICS: Understanding the Science Immunology Clinical Trials Pulmonary Rehabilitation Managing Your Care and Medical Team Life After Lung Cancer Passages in Caregiving Keeping Cancer at Bay - Author Lynne Eldridge, MD Write for Life - Author David Tabatsky Finalized agenda will be posted once all experts/speakers are confirmed. Conference Hotel Information: The conference will be held at the Keybridge Marriott in Arlington, VA. Discounted hotel rooms are $131 per night for single/double occupancy (http://www.marriott.com/hotels/travel/w ... e-marriott). Instructions on how to book your room at these discounted rates will be provided on your email confirmation. The Metro can take you from the airport to within walking distance of the hotel. Travel Grants: First-time registrants for HOPE Summit are encouraged to apply for a travel grant. Travel grants are available based on need and availability. There are a very LIMITED number of travel grants available. If you are in need of partial or full travel assistance to attend the 2014 HOPE Summit, we encourage you to fill out the travel grant application AFTER you’ve registered. Travel grants are for travel transportation to Washington, DC and 2-night hotel accommodations for May 2-4, 2014. The application for a travel grant can be found here. First consideration of travel grants will be given to first-time participants; however, we encourage all survivors to apply for a travel grant. For those making/paying for their own travel arrangements, we will have a discounted block of rooms at the Keybridge Marriott that we can reserve for you. Please let us know ASAP if you need us to book your room. Survivors’ Challenge: You can join the Survivors' Challenge by creating a fundraising page and collecting donations to support LUNGevity. You can even send emails out directly from your page, asking your friends and family to help you with the Challenge. And we'll provide fundraising tips to help you along. Raise $1,000 or more, and we'll reward you with an all-expenses-paid trip to the HOPE Summit including airfare, a two-night hotel stay, and ground transportation. Find more details on the Challenge here. If you have already registered and want to apply for a travel grant, click “TRAVEL GRANT” to begin.

Hi Dana, Welcome to LCSC! We are sorry you had to find us, but we are so glad you did! Please keep us updated on your mom. Best Regards, Nikole

Hello LCSC members. I am currently seeking a SCLC survivor to support a recently diagnosed 55 year old female with SCLC. If you can help, please message me as soon as possible. It can simply be email support to offer encouragement and hope. Please consider being a LifeLine to someone in need. Thank you so much! Thank you, Nikole

Celebrating 16 years - That's great news Donna!

Hi Cindy! I hope your husband is doing well with his recovery and I hope you are doing ok. Positive thoughts coming your way! Please update us when you get a chance. Take care! Best Regards, Nikole