NavigateLungCancer.org: A New Online Toolkit Now Available to Help People Living with Lung CancerRead Now
Originally published by Brandpoint (BPT) on Monday, April 13, 2015 12:00 am
A lung cancer diagnosis may bring up a variety of difficult emotions, and navigating the next steps involved in daily life can be especially overwhelming for patients and their loved ones. Emotions may range from anger at the loss of control and uncertainty about medical decisions to fear about what happens next. And these feelings may be coupled with the fact that when patients and their families go online to learn more, they see discouraging statistics on incidence or complex medical information, when what they really need is help dealing with the impact of lung cancer on their lives and emotions.
As hard as a lung cancer diagnosis can be, there is support and practical information available on NavigateLungCancer.org to help lung cancer patients and their loved ones during the days ahead. The website was designed to be a comprehensive, go-to resource supporting the lung cancer community holistically, providing practical, day-to-day information that goes beyond their diagnosis. In developing the site, Bristol-Myers Squibb partnered with seven leading patient advocacy organizations to ensure it would provide the type of logistical, financial and psychosocial resources that are needed and meaningful for the lung cancer community.
"NavigateLungCancer.org will allow patients and caregivers to spend more time focused on the path forward and less time figuring out the next step,” said Bonnie J. Addario, Founder and Chairman of the Bonnie J. Addario Lung Cancer Foundation. “A lung cancer diagnosis comes with a whole new set of day-to-day challenges and we've collaborated with other cancer organizations and stakeholders to collect nutritional, financial, organizational or even physical assistance services in one place and make it available for patients and their families.”
In addition, the site offers interactive resources that may help manage living with lung cancer and the impact on everyday activities, including the interactive “The Road Ahead” and “Personal Journal” tools.
The Road Ahead
Considered a simple guide for patients and their families to find the right resources at every juncture in their lung cancer journey, “The Road Ahead” includes an overview of organizations offering financial assistance for everyday activities, such as house cleaning, transportation services, fuel costs and meal delivery programs. Visitors can also find valuable information to address legal and financial concerns and community support groups.
A Personal Journal
Many faced with a lung cancer diagnosis need an outlet to articulate their emotions during a challenging and uncertain time. An online and downloadable “Personal Journal” tool allows patients and caregivers to record their hopes and fears via a series of questions developed by oncology social workers. Visitors who sign up to receive email updates from the website will also be mailed a treatment journal to keep track of appointments and capture thoughts and feelings.
Visitors to the site can also download educational assets and register to receive emails with helpful tips and supportive messages about what you or a loved one might be going through.
Beyond being a resource for patients and caregivers, the site is also optimized for nurses, providing educational videos that may allow them to learn more about lung cancer patient needs from patient advocacy groups and research in the field from clinical trial institutions.
NavigateLungCancer.org was developed by Bristol-Myers Squibb in partnership with the Cancer Research Institute, Lung Cancer Alliance, Bonnie J. Addario Lung Cancer Foundation, LUNGevity Foundation, Cancer Care, Cancer Support Community and Free to Breathe. Bristol-Myers Squibb does not endorse these organizations. The information provided is meant for informational purposes only and is not meant to replace a physician's medical advice.
Visit www.NavigateLungCancer.org for more information and updates on the latest lung cancer tools and resources.
National Grant Available for Squamous Cell Non-Small-Cell Lung Cancer.
NEW YORK, NY (August 1, 2014) – CancerCare, the leading national nonprofit organization providing free, professional support services and financial assistance to anyone affected by cancer, now has a national grant available for people diagnosed with squamous cell non-small-cell lung cancer (NSCLC).
The fund will assist both men and women with transportation costs associated with their cancer treatment. Applicants must be diagnosed with squamous cell, a subtype of NSCLC, and meet additional eligibility guidelines. To apply or learn more, call 800-813-HOPE (4673). The program is funded by a generous contribution from Celgene Corporation.
CancerCare offers additional free resources through www.lungcancer.org. By visiting the website, patients and loved ones can gain access to oncology social workers who provide both individual and group counseling, in person, over the phone or online, to answer questions, address concerns and provide information about cancer-related issues. Important information is also available on diagnosis, treatment and clinical trials.
“CancerCare works with lung cancer patients and survivors every day, and we know a lung cancer diagnosis can be frightening for patients, families and caregivers,” said CancerCare Lung Cancer Program Coordinator Win Boerckel, MSW, MBA, LCSW-R. “Our staff of professionally trained oncology social workers can help to navigate the challenges of a diagnosis with answers, advice and support.”
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. Headquartered in New York, NY, CancerCare maintains three additional locations in Norwalk, CT, Ridgewood, NJ and Syosset, NY.
To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).
The Bonnie J. Addario Lung Cancer Foundation and Cancer Commons Partner to Help Patients Find Their Best Treatment OptionsRead Now
Patients Share Their Lung Cancer Experiences and Data to Get Personalized Treatment Guidance
SAN CARLOS, Calif. & PALO ALTO, Calif.--(BUSINESS WIRE)--The Bonnie J. Addario Lung Cancer Foundation (ALCF) and Cancer Commons today announced the launch of a new program called MyCancerCommons, created to make sure critical lung cancer treatment information reaches the patients who need it.
“We are thrilled to collaborate with the ALCF to provide this revolutionary resource, which empowers today’s patients to improve their own outcomes. We also look forward to expanding the program to include all types of cancer by the end of 2014.”
Lung cancer is the second leading cause of death in the U.S. With a 1 in 14 lifetime risk of developing lung cancer, more than 220,000 Americans are diagnosed each year, and nearly 160,000 die of the disease.
“Lung cancer is not generic. Every patient’s disease is unique at the molecular level,” said Bonnie J. Addario, stage 3b lung cancer survivor and founder of the ALCF. “So how can a patient know what treatment is most likely to work for them? By knowing what’s worked for other patients with similar types of lung cancer.”
Cancer Commons and the ALCF are aiming to make potentially life-saving insights available to all patients. Once data is collected from thousands of lung cancer stories, Cancer Commons and the ALCF can begin to show patterns in treatment choices, side effects, quality of life, and outcomes. Through MyCancerCommons, patients will have access to expert-reviewed personalized news and resources they can use to inform their own clinical care.
MyCancerCommons also serves as an entryway into the highly personalized services provided by the ALCF. The ALCF can consult a patient’s MyCancerCommons profile while working directly with the patient to ensure he or she is on the best possible treatment path.
“Everyone who has been diagnosed with cancer has felt the fright and anguish of having to make life and death decisions without adequate information, data, or time,” said Marty Tenenbaum, PhD, Cancer Commons’ founder and chairman, and himself a stage IV melanoma survivor. “We are thrilled to collaborate with the ALCF to provide this revolutionary resource, which empowers today’s patients to improve their own outcomes. We also look forward to expanding the program to include all types of cancer by the end of 2014.”
Additionally, Marty Tenenbaum, PhD, will be the guest speaker at the ALCF’s Lung Cancer Living Room Support Group taking place tomorrow, April 22 at 5:30 p.m. (PDT). More information can be found here.
Visit MyCancerCommons at: https://my.cancercommons.org/lcf.
About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating lung cancer through research, education, early detection, genetic testing, drug discovery and patient-focused outcomes. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $10 million for lung cancer research. To learn more, please visit http://www.lungcancerfoundation.org. Follow the ALCF on Facebook and Twitter.
About Cancer Commons
Cancer Commons is a 501c(3) non-profit that unites patients, oncologists, and scientists to make sure critical information gets to the patients who need it. Analysis of distinct patient data from thousands of donors will reveal patterns in treatment choices, drug effectiveness, side effects, quality of life, outcomes and more. For more information, visit http://www.cancercommons.org. Follow Cancer Commons on Facebook and Twitter.
On February 18, don't miss the leaders and armies of lung cancer advocacy groups as they align like the stars to discuss efforts to achieve the goal and raise funds to commit to this "cost of living with lung cancer."
Join members of the Bonnie J. Addario Lung Cancer Foundation, American Lung Association, Dusty Joy Foundation, Lung Cancer Foundation of America (LCFA), and Lungevity for an unprecedented collaboration in the fight to end lung cancer.
"Now that we've heard what the experts have to say, what can we do together to move the needle forward?"
- Danielle Beltramo - Hicks
Whether you join us in ALCF’s Living Room or attend remotely through Livestream on your computer, you will be informed about Living with Lung Cancer.
If you are having trouble getting the live stream working, click here for help and troubleshooting tips.
The Patient Handbook, “Navigating Lung Cancer, 360 Degrees of Hope,” is the first-ever comprehensive, up-to-date patient resource for Lung Cancer.
For a hard copy of the handbook please email firstname.lastname@example.org or click below to download a copy.
The Bonnie J. Addario Lung Cancer Foundation presents: "The Next Decade in Lung Cancer"Read Now
The brightest minds in research, academics and advocacy unite at the Lung Cancer Living Room.
Published on November 5, 2013 by The Bonnie J. Addario Lung Cancer Foundation
SAN CARLOS, CA, Nov. 5, 2013 /PRNewswire-USNewswire/ -- The Bonnie J. Addario Lung Cancer Foundation (ALCF) is proud to present The Next Decade in Lung Cancer, a three-part series of the Lung Cancer Living Room, the nation's premiere live-streamed support group for patients, family and friends.
"We are asking the big question. What will it take to make lung cancer a chronically managed disease in the next 10 years?" said Bonnie J. Addario, lung cancer survivor and founder of the ALCF. "The Next Decade in Lung Cancer offers a glimpse into the future from the perspective of researchers, advocates and most importantly patients."
The three-part series will unite industry leaders in medicine, research and technology who will discuss the latest advancements and breakthroughs in lung cancer. Advocacy and policy agencies and foundations will also discuss access, information, education and needed legislative changes.
The series, which will take place over the next three months, kicks off on November 10, 2013 at 2 p.m. (PST). Guests who attend the Living Room in-person will have the opportunity to network with other patients and with the guest speakers listed below. Online guests can also participate through the live stream, asking questions and sending comments via a live chat function. The session also airs at a later date locally on Peninsula TV.
The ALCF regularly hosts the Living Room on the third Tuesday of every month and the program is live-streamed online. It is the nation's premier lung cancer support group for lung cancer patients and their families, offering expert opinion and advice not found anywhere else. Visit www.ustream.com and select the Lung Cancer Living Room Support Group channel to see the video archive, including full length videos and 20-minute condensed highlighted versions, available the week after the group meets.
The patient empowerment educational series is made possible through funding partners: Biodesix, Bristol-Myers Squibb, Celgene, Genentech and The Safeway Foundation.
About The Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. The ALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $10 million for lung cancer research and patient services.
Read more here.
The Bonnie J. Addario #LungCancer Foundation's 360 Community Hospital Program Improving Individualized Standard of Care for PatientsRead Now
Pilot program already showing positive patient outcomes, with ultimate goal to increase the lung cancer survival rate.
SAN CARLOS, CALIF., JUNE 20, 2013 — /PRNewswire-USNewswire/ -- The Bonnie J. Addario Lung Cancer Foundation is creating a new patient-focused approach to standard of care for lung cancer with the launch of the Patient 360 Community Hospital Program. The program uses a collaborative, multi-disciplinary model to provide an individualized approach to care, giving the patient access to the newest and most effective diagnostic and therapeutic techniques for their specific needs.
"What we're finding is by using a team approach to individualized care we can begin to incrementally increase the survival rate of people diagnosed with lung cancer," said Bonnie J. Addario, a stage 3B survivor and founder of the Bonnie J. Addario Lung Cancer Foundation (LCF). "Because 80 percent of patients receive treatment at their local community hospital, these are the centers where the greatest good can be done for the greatest number."
Working with an elite team of pathologists and specialists to create an unsurpassed paradigm for lung cancer treatment, the LCF is in essence creating lung-specific centers of excellence in the community hospital setting. The program ensures that every patient receives molecular testing, combined with a multi-disciplinary team approach and selected treatment options unique to the patient's needs.
"The 360 Program's multidisciplinary approach is unique because it coordinates the standard of care for patients individually, giving each patient what's right for them." Addario said. "So the oncologist, the radiation oncologist, the pathologist, the pulmonologist, and the surgeon are all communicating and collaborating, not just with academic, industry and technology, but internally as well."
During the first six months of the pilot stage of the program, preliminary metrics and data have shown that patient outcomes have improved dramatically.
The program is rigid in its standard of treatment. Every patient in the pilot 360 program received molecular testing to better determine personalized treatments, as will be the case for all future patients as the program expands to more community hospitals in the coming years. Three new hospitals are expected to enlist by the end of 2013 and 30-50 by the end of 2015.
The program's process focuses on early detection, diagnosis, treatment and treatment monitoring, and patient follow up. Critical in the program's standard of care is ensuring all patients receive molecular testing, which uses DNA, RNA and proteins to test for specific states of disease. In lung cancer, molecular testing is used to determine potential patient response to targeted therapy.
The LCF has received generous support from a number of distinguished industry partners, including GE Healthcare, Pfizer and Boehringer-Ingelheim. GE Healthcare provided in-kind services from its oncology solutions division to help create the program's flow and metrics. The LCF is working with Boehringer-Ingelheim and Pfizer in partnership to broaden the overall awareness of multi-disciplinary collaborations that incorporate personalized testing to initiate timely and appropriate lung cancer treatments. Boehringer-Ingelheim also leads the letstestnow.com campaign, set up to improve patient outcomes through a multidisciplinary approach to biomarker testing in advanced non-small cell lung cancer.
"Every community hospital that joins us and implements this new multi-disciplinary, patient-centric approach to standard of care will be given a formal seal of excellence awarded by the LCF, signifying that no lung cancer patient is left behind," Addario said.
The pilot program launches during a time when an estimated 228,190 new cases of lung cancer will be diagnosed in the United States this year. The American Cancer Society also estimates 159,480 Americans will die from the disease this year.
The facts about Lung Cancer cannot continue to go unnoticed:
"The Foundation is powering progress through ground-up initiatives, educating patients to identify solutions and make timely and meaningful change," Addario said. "The LCF is empowering patients to take a seat at the table wherever discussions are being made about their care. We are committed to improving the standard of care and believe that chronically managed lung cancer using molecular testing to determine personalized therapies is the future of lung cancer treatment and the pathway to increasing the survival rate."
About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $10 million for lung cancer research.
SOURCE Bonnie J. Addario Lung Cancer Foundation
We are extremely proud to be an affiliate of the Bonnie J. Addario #LungCancer Foundation @End_Lung_CancerRead Now
Click on image below for a larger view.
Join the #LungCancer Living Room Tonight to Learn How Treatment is Getting PersonalRead Now
Originally published on 5/21 at About.com by Lynne Eldridge.
Copyright 2013 About.com.
A diagnosis of cancer is like being immersed in a foreign language camp you don't remember enrolling in. And that was in the past. As advances are made in lung cancer treatment, a whole new array of concepts and terms comes to light. You may have heard of terms such as EGFR and ALK, perhaps even KRAS...
Thankfully this "new" language is worth learning about, and we're fortunate to have people like Bonnie Addario who have set out to make the education process easier. The most significant advances in lung cancer treatment - treatments that have actually budged the survival rate for some people in the last decade - have a lot to do with targeting genetic mutations in cancer cells. What's really exciting is that not only have these treatments improved survival for some people, but they're designed specifically for your type of tumor. It's interesting that cold hard science is reminding us of what we often forget in medicine - that everyone is unique and special.
On Tuesday, May 21, 2013 you are invited to join the Lung Cancer Living Room to learn more. Sponsored by the Bonnie J. Addario Lung Cancer Foundation, the Living Room is a monthly support group (meeting on the 3rd Tuesday of the month) that covers topics that people with lung cancer are interested in learning about - in addition to being a place where you are not alone as you live with lung cancer. You can take part from your own living room on your laptop, or attend the group in person at the headquarters in San Carlos, California.
The date: Tuesday, May 21, 2013
The time: 5:30 PM Pacific Standard Time
Guest speaker: Paul Billings, MD, PhD. Dr. Billings is a physician, lecturer, professor, and consultant on genetic information. He will be discussing the road map towards precision medicine, and the role of Next Generation Sequencing and what it means to someone diagnosed with lung cancer.
How to join the conversation: Click on Lung Cancer Living Room Live Streaming and follow the prompts.
A concept that might be helpful to understand before tuning in is that there are many types of lung cancer. If I were to talk with 70 people with lung cancer, they would have 70 different types of lung cancer. Everyone has different mutations present in their cancer cells. And targeting these abnormalities not only hits the mark better, but does so without many of the dreaded side effects of chemotherapy.
It can also help a little to understand exactly what a cancer cell is - and why they are so hard to get rid of. A difficult-to-understand concept is that cancer is caused by not just one mutation, but a series of mutations. There are often mutations that result in cells continuing to grow and divide when they shouldn't. There are often mutations in proteins that tell cells to stop growing. There are also often mutations in genes that code for proteins that tell cells to die (a process called apoptosis.) At the risk of being overly simplistic, the excitement over genetic sequencing is that these mutations can be discovered and overcome with new therapies. Example of medications that work in this way include Tarceva (erlotinib) and Xalkori (crizitonib.)
If you're interested in learning more about the mutations and abnormalities in cancer cells - and hence, the approach that new medications are taking to treat it, check out:
I hope you'll get the chance to take part in this wonderful opportunity. I'm very excited myself to hear the latest in treatments that can be tailored for those I care so deeply for with lung cancer.
To join and "like" the Living Room community, go to the Lung Cancer Living Room Facebook Page.
Join the Bonnie J. Addario Lung Cancer Foundation for the Lung Cancer Living Room Support Group on May 21, 2013. Live Online!Read Now
The Lung Cancer Living Room welcomes Paul Billings, MD, PhD as their guest speaker on May 21, 2013. Dr. Billings is a physician, lecturer, researcher, professor, and consultant on genetic information. He will be discussing the road map towards precision medicine and the role of Next Generation Sequencing and what it means to someone diagnosed with Lung Cancer. For more information on Dr. Billings CLICK HERE
Its going to be another great night, so BJALCF hopes to see you in person or online via Ustream: http://www.ustream.tv/channel/the-lung-cancer-living-room-support-group
For more information CLICK HERE or contact Danielle Hicks at email@example.com or (650) 598- 2857.
Living Room Partners
The Bonnie J. Addario Lung Cancer Foundation Announces Partnership with Smart Patients to Launch New Online Community for Lung Cancer PatientsRead Now
SOURCE: Bonnie J. Addario Lung Cancer Fndtn
New platform will allow patients to learn from each other, share reliable information farther and faster than ever before
SAN CARLOS, Calif., April 18, 2013 /PRNewswire-USNewswire/ -- Today, the Bonnie J. Addario Lung Cancer Foundation (LCF) announces its partnership with Smart Patients, who today launched a free online community for cancer patients, caregivers and others to talk about treatments, clinical trials, and more. The partnership has one purpose – to empower patients.
"Patients hold the key to unlocking the genetic code to curing lung cancer, so we're extremely excited to partner with this first-of-its-kind, easy way for patients and doctors to connect online," said Bonnie J. Addario, a stage 3B lung cancer survivor and founder of the Bonnie J. Addario Lung Cancer Foundation. "The partnership embodies one of our driving principles: empowered patients live longer."
The LCF truly believes that educated and empowered patients live longer and offers three key patient programs:
One of the founders of Smart Patients, Roni Zeiger, M.D., the former Chief Health Strategist at Google, will speak further about the online community at the LCF's Living Room support group in June. Today, Zeiger also announced the launch of Smart Patients at TEDMED conference in Washington D.C.
"The Lung Cancer Foundation has been an early partner and is helping to seed the community where science meets social," said Roni Zeiger, Founder Smart Patients. "We're excited to provide a platform where the patient's voice is central and we can learn from their insights to move science forward even faster."
About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $10 million for lung cancer research. To learn more, please visit www.lungcancerfoundation.org.
About Smart Patients
Smart Patients is an online community for cancer patients and caregivers. The community includes a clinical trial search engine that presents trial data from ClinicalTrials.gov in a patient-friendly format. The community platform has been in private beta testing since January 2013 and is now open to all cancer patients and caregivers. To learn more visit us at www.smartpatients.com.
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