NikoleV
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Posts posted by NikoleV
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We could still use a few more responses to this survey. Clinical trial experience not required. Thank you in advance. https://lungevity.az1.qualtrics.com/jfe/form/SV_8k2XZWdfEqQciIC
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Are you interested in helping us improve how the risks and benefits of participating in a clinical trial are described to potential participants? We are seeking your feedback! We have a short survey that you can complete online. Both patients and caregivers with any type of lung cancer diagnosis can participate. Clinical trial experience not required. https://lungevity.az1.qualtrics.com/jfe/form/SV_8k2XZWdfEqQciIC
Thank you!
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There are still a few travel grants available for first time survivor/patient attendees. Learn more here: https://www.lungevity.org/for-patients-caregivers/support-services/survivorship-conferences/hope-summit/travel-grants-for
The deadline to book your hotel room in the LUNGevity room block is April 13, so be sure to make your plans now. We would love for you to join us in Rockville, MD, May 5-7, at this one of a kind event! https://book.passkey.com/event/50393538/owner/2644099/home
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Hi Karen,
Tom is correct. This is a big topic of discussion and may change in future events, but this one will be in person only with a few sessions possibly being recorded. I will keep you updated if I hear otherwise. Have a great weekend!
Nikole
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Tuesdays are a time to virtually connect with the lung cancer community. Join us on March 28, at our weekly virtual meetup with special guest Rachel Butler as we discuss palliative care and how it can be helpful to those living with lung cancer. Sign up: https://us06web.zoom.us/meeting/register/tZUqceGvqj0pGtHDC_OJD-PrFGmQ2AY6MniJ
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Celebrate #NationalNutritionMonth with Cancer Wellness Center and LUNGevity Foundation on Wednesday, March 8, at an interactive virtual event.
Learn valuable information about how good nutrition can help you live well through lung cancer treatment and beyond with Oncology Dietitian Lori Bumbaco.
Watch a live cooking demo and participate in a Q&A with Lori to help you build confidence in the kitchen. This event is free to attend but advanced registration is required. Sign up here: https://us06web.zoom.us/webinar/register/WN_e3rjZ0FxRFK8mNsf3TnapQ
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Registration is now open for the HOPE Summit! The lung cancer community is coming together May 5-7th and we want to you to be there. To learn more and register for this weekend event for patients, survivors, and caregivers, visit https://www.lungevity.org/for-patients-caregivers/support-services/survivorship-conferences/hope-summit
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It's National Pizza Day! What's your favorite topping?
8 Tips for a Healthier Pizza, According to Registered Dietitians | Everyday Health
https://www.everydayhealth.com/diet-nutrition/easy-ways-to-make-pizza-night-healthier/
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Tuesday, join us for a virtual meetup for those living with all types of lung cancer.
If you do not have a lung cancer mutation, the Wednesday meet up is for you.
Thursday, tune in to the latest LUNGevity Action Network Webinar and learn what to expect in Washington in 2023.
You can register for all of these virtual events via the calendar www.lungevity.org/calendar
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While our bodies can have a wide range of naturally occurring, harmless mutations in different genes, driver mutations are key to driving the development of cancer.
There are many driver mutations. Researchers have been developing drugs that target specific driver mutations in lung cancer, creating therapies for those patients whose lung cancer harbors them.
Read our latest blog where Dr. John Heymach, MD Anderson Cancer Center and member of LUNGevity’s Scientific Advisory Board, dissucses making personalized medicine even more personal.
https://www.lungevity.org/blogs/researchers-make-new-inroads-for-egfr-exon20-nsclc-patients
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Her doctor was excited, which made Nina excited. They high-fived and couldn’t believe the progress that had been made in just a few weeks. The clinical trial was already having positive effects.
Before her clinical trial success, Nina went through the standard treatments for people with small-cell lung cancer (SCLC). She was diagnosed in early 2014, and the plan was to try different chemo and radiation therapies.
But, after 14 months of treatment with side-effects, it became clear the standard treatments were no longer effective at stopping the cancer from spreading. Nina’s doctor came to her with a proposal: join a clinical trial at a nearby hospital — Memorial Sloan Kettering Cancer Center in New York
Read more here: https://www.lungevity.org/blogs/how-nina’s-clinical-trial-led-to-high-five-celebration
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LUNGevity Foundation Welcomes Michelle Futrell, RN, as Director of Lung Cancer Screening Programs and Initiatives
Michelle’s vast personal and professional experience will help accelerate efforts to increase lung cancer screening
FOR IMMEDIATE RELEASE
Media Contact
Linda Wenger
lwenger@LUNGevity.org
(973) 449-3214WASHINGTON, DC (January 23, 2023) – LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, welcomes Michelle Futrell, MSN, MBA, RN, as Director of Lung Cancer Screening Programs and Initiatives. In this new role, Michelle will develop the organization’s blueprint for lung cancer screening programs, create educational programs for healthcare providers, and directly support patients seeking information on lung cancer screening.
Michelle has a Bachelor of Science in Nursing as well as a dual degree—Master of Science in Nursing and Master of Science in Business Administration. Prior to joining LUNGevity, Michelle worked as a registered nurse, 10 years of which were in the emergency department. She most recently spent eight years at Virginia Commonwealth University as a lung cancer screening program coordinator.
“My personal battle with cancer gives me a unique perspective and has helped me in my current role. When I talk to individuals who may be nervous about having a lung cancer screening for fear of the results, I understand where they are coming from. At the same time, it drives me to want to help educate individuals about lung cancer screening, its purpose, and its importance,” says Michelle.
“We are thrilled that Michelle has joined the LUNGevity team,” says Andrea Ferris, president and CEO of LUNGevity Foundation. "Her professional experience with lung cancer screening brings invaluable insights and expertise. Michelle will help us accelerate the uptake of lung cancer screening among the eligible population and especially among hard-to-reach communities. Lung cancer screening saves lives."
About LUNGevity Foundation
LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer. The foundation works tirelessly to advance research into early detection and more effective treatments, and to ensure that patients have access to these advances. 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 provides 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 16 Americans will be diagnosed with lung cancer in their lifetime.
More than 238,000 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.
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We are working with the Association of Community Cancer Centers (ACCC), who is conducting a survey of people with cancer and their caregivers. The goals of this survey are to:
• Understand your views of using technology to share health information with your healthcare team
• Identify the benefits and challenges of using technology to track and manage symptomsSurvey results will guide the development of educational resources. Respondents will have the option to enter a raffle for an Amazon gift card. Please contribute to this much-needed initiative by completing the survey by January 27, 2023.
Click here to take the survey: https://surveyresearchfeedback.com/e.asp?p=ACC2201&S=C&Id=r -
Hi @Joost Voorthuis - Thank you for sharing your experience with this trial! How is your issue with the break outs going? I hope they've been able to find a solution and/or provide relief for you.
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Overall health becomes a major priority when undergoing lung cancer treatment, and staying active is one way to include healthy behaviors in your life. Talking with your doctor about exercise and lung cancer is important to remain safe and do activities your body and lungs can handle. If you feel chest or lung pain during any workouts, stop immediately and tell your doctor.
The purpose of low-impact workouts is to lightly work muscles and keep them strong. It’s a specific exercise plan to limit the amount of stress put on your body. Adding exercise to your lung cancer treatment plan is about maintaining your health so your body continues to have the strength to go through treatment and keep the quality of life important to you.
Nobody needs to do all the exercises listed below. These ideas are meant to show the range of options available for you and your doctor to talk about for a safe and fun low-impact exercise plan.
Read more here: https://www.lungevity.org/blogs/exercise-and-lung-cancer-low-impact-workouts
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The January 24th virtual meetup will feature a physical therapist to answer your questions about breathing and exercise. Haven't attended a virtual meetup yet? No problem. You can register here for the Tuesday meetup and learn more about the weekly meetups we have to offer: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
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Check out our latest blog featuring a conversation with Dr. John Heymach, MD, PhD, MD Anderson Cancer Center, and learn about targeted therapy options for patients with EGFR Exon20+ NSCLC. https://bit.ly/3iwPnqJ
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Are you a newly diagnosed patient, looking to gain valuable insights from others who have the same experience? Or have been living with lung cancer for years and want to support others? Register and join one of our virtual meetups happening this week: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
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The holiday season can feel overwhelming. Especially if you are living with or caring for someone with lung cancer. Ask questions, get support, and hear what others are doing to de-stress this season during our special virtual meetup on December 20th. Expert Sarah Bechard, LSCSW, will be on to help you cope this holiday season.
Register here: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
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We are proud to announce the 2022 recipients of the ALK Positive/LUNGevity ALK-Positive Lung Cancer Research Awards.
The grant monies, totaling $1.75 million, were raised by ALK Positive and represent patients with ALK-positive non-small cell lung cancer themselves directly influencing the direction and focus of the research that affects their lives. This year’s awardees are the third cohort to receive these awards.
The selected research projects will address unanswered questions in the ALK space and seek to quickly improve outcomes for the approximately 5% of patients with non-small cell lung cancer whose cancers have tested positive for an alteration in the anaplastic lymphoma kinase (ALK) gene.
The recipients of the 2022 ALK Positive/LUNGevity ALK-Positive Lung Cancer Research Awards are:
Trever Bivona, MD, PhD, University of California, San Francisco—Defining and novel therapeutic targeting of ALK fusion protein granules
Roberto Chiarle, MD, Boston Children’s Hospital/Harvard Medical School—Development of ALK-specific TCR-T cells for the eradication of ALK+ NSCLC
Angel Qin, MD, University of Michigan—Gilteritinib for lorlatinib-resistant ALK NSCLC
"We are delighted to continue our partnership on translational and clinical trial research with LUNGevity Foundation. The three scientists selected for the 2022 ALK Positive/LUNGevity ALK-Positive Lung Cancer Research Awards are international experts in the field. Their projects will expand ALK Positive’s strategic investment in funding research that will add new treatment options to the current arsenal of tyrosine kinase inhibitor-based treatment regimens,” said Ken Culver, MD, Director of Research & Clinical Affairs of the ALK Positive patient-driven organization.
To learn more, visit https://bit.ly/3BeHMTN
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Would you like access to the latest #lungcancer information from your living room?
Register for Learn with LUNGevity and Sentara Cancer Network for our December 1st webinar. Hear from experts about new therapies, updates, and ways to live well after a lung cancer diagnosis. Learn about vital support programs and resources offered by LUNGevity Foundation and Sentara Cancer Network. This free virtual event will be held via Zoom. Registration is required: https://bit.ly/3W8FGxQ #LCAM
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Take a behind-the-scenes look at how researchers study lung cancer during our December 2nd Facebook Live. Join lung cancer researcher Dr. Triparna Sen as she digs into what’s known about how EGFR-positive NSCLC cells transform into SCLC to escape targeted therapy treatment.
Get more information and RSVP here: https://fb.me/e/2V0nrioco
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LUNGevity Foundation’s No One Missed Campaign Celebrates Second Year of #KnowYourBiomarker Storytelling Initiative to Drive Awareness of Comprehensive Biomarker Testing in Lung Cancer
Awareness campaign underscores importance of biomarker testing as part of “KNOWvember” during Lung Cancer Awareness Month
FOR IMMEDIATE RELEASE
Media Contact
Linda Wenger
lwenger@LUNGevity.org
(973) 449-3214Alex McClung, JPA Health
amcclung@jpa.com
(202) 559-2813WASHINGTON, DC (November 1, 2022) – LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, today celebrates the second year of its #KnowYourBiomarker social media initiative as part of the No One Missed campaign aimed at driving awareness of comprehensive biomarker testing in non-small cell lung cancer (NSCLC).
The anniversary coincides with the start of Lung Cancer Awareness Month in November, which LUNGevity is recognizing as “KNOWvember” to spread awareness of the importance for people living with NSCLC—and their healthcare team—of knowing their biomarker status to inform the appropriate treatment for their type of lung cancer.
“Time and time again, we’ve heard stories from people living with lung cancer about the difference comprehensive biomarker testing has made for their treatment journey,” said Andrea Ferris, president and CEO of LUNGevity Foundation. “Throughout the past year, No One Missed’s #KnowYourBiomarker initiative has provided an outlet for patients, their loved ones, and healthcare providers to share their unique stories and spread the word about why this testing is essential. As we enter the second year of this initiative, we are continuously encouraged by the strength of our community and their willingness to share their stories in the hope of helping others who have been diagnosed with NSCLC.”
#KnowYourBiomarker invites people living with NSCLC and their loved ones to tell their biomarker stories. Here are two examples of people living with lung cancer who shared their biomarker testing experiences as part of the #KnowYourBiomarker initiative.
Lavern McDonald, New York, NY
Biomarker: EGFRAs a social studies teacher in New York City for the past 20 years, Lavern McDonald knows firsthand the value of lifelong learning. This is a philosophy she applied when faced with a stage IV lung cancer diagnosis in 2018 at age 52. Lavern underwent multiple tests and ultimately found herself at the Mount Sinai Tisch Cancer Center, where a CT scan revealed tumors in her lungs. She was assigned an oncologist, which is when she first learned of biomarker testing. Soon after, she learned the cancer was EGFR-positive, which meant she was eligible to receive a targeted therapy specifically intended for her type of cancer.
AJ Patel, Irvine, CA
Biomarker: ROS1When husband and father of three AJ Patel was diagnosed with stage IV non-small cell lung cancer (NSCLC) in 2013, he was told he only had six months to live. He spent a week in despair before placing a call to LUNGevity Foundation that changed the entire trajectory of his diagnosis. Through LUNGevity’s network of mentors, AJ learned about biomarker testing. He soon learned the cancer was positive for a mutation called ROS1 that could be treated with a targeted therapy. Nearly nine years later, AJ is living life to the fullest and has witnessed his three children go on to college, where all three are pursuing medical degrees.
As part of KNOWvember, No One Missed will be hosting a one-hour Facebook Live event in collaboration with BlackDoctor.org at 7:00 pm ET on Wednesday, November 9: “Lung Cancer Awareness Month: Coping with a Lung Cancer Diagnosis and Advocating for Treatment.” Panelists will discuss the importance of screening, steps to take on receiving a lung cancer diagnosis, and the importance of biomarker testing to inform treatment, among other topics.
Interested in sharing your own biomarker story? Join the #KnowYourBiomarker conversation online.
About the No One Missed Campaign
No One Missed is a community-led campaign driven by LUNGevity Foundation and composed of patient advocacy, pharmaceutical, and biotechnology organizations. The campaign’s mission is to build public awareness of comprehensive biomarker testing as a critical part of every non-small cell lung cancer (NSCLC) diagnosis and empower patients with NSCLC to discuss comprehensive biomarker testing with their healthcare team. For more information on comprehensive biomarker testing, including resources that people living with NSCLC can use to discuss testing with their healthcare team, visit NoOneMissed.org.
No One Missed is supported by founding partner AstraZeneca; by premier members Amgen and Sanofi; by supporting members Genentech, a member of the Roche Group, and Pfizer Inc.; by members AbbVie, Daiichi Sankyo, Merck & Co., Inc., Regeneron Pharmaceuticals, and Thermo Fisher Scientific. Additionally, No One Missed is supported by partners ALK Positive, Academy of Oncology Nurse & Patient Navigators (AONN+), EGFResisters, Exon 20 Group, the International Association for the Study of Lung Cancer, Oncology Nursing Society, KRAS Kickers, MET Crusaders, MYLUNG ConsortiumTM, NTRKers, RETpositive, The ROS1ders, and University of Chicago Medicine Comprehensive Cancer Center.
About LUNGevity Foundation
LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer. The foundation works tirelessly to advance research into early detection and more effective treatments, and to ensure that patients have access to these advances. 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 provides 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.
Please visit LUNGevity.org to learn more.
HOPE Summit 2023: May 5-7, 2023 Bethesda North Marriott, Rockville, MD
in CONFERENCES
Posted
We're just 4 weeks away from HOPE Summit 2023! Who's attending? #ThisIsHOPE23
**Register here, if you haven't already: https://fundraise.lungevity.org/index.cfm?fuseaction=donorDrive.event&eventID=1044
**The hotel room block will be available at a group rate of $175/night + tax until Thursday April 13. https://book.passkey.com/event/50393538/owner/2644099/home
**There are still travel grants available for first time attendees: https://www.lungevity.org/for-patients-caregivers/support-services/survivorship-conferences/hope-summit/travel-grants-for
**HOPE Summit FAQ's: https://fundraise.lungevity.org/index.cfm?fuseaction=cms.page&id=2055&eventID=1044