The virtual kickoff for Free to Breathe Kites took place Saturday, junio 26. In case you missed it, watch the recording below! Fundraising will take place all summer, and you can join in by registering at LCRF.org/kites.
News
Groups Launch Awareness Campaign to Combat Inequity in Lung Cancer Prevention, Detection and Treatment
NEW YORK, NY (junio 25, 2021) – The Lung Cancer Research Foundation (LCRF) and the African Methodist Episcopal Church International Health Commission (AMEC IHC) have joined forces to bring awareness of the prevalence, risk factors, importance of screening, and prevention of lung cancer in Black Americans.
Lung cancer affects Black Americans, particularly Black men, differently than their white counterparts. Black men are 11% more likely to be diagnosed with lung cancer and 9.8% more Black men die from the disease1. While smoking remains the primary risk factor to developing lung cancer, about 15% of lung cancer patients do not smoke.2
The program, Breathe Easy: Good News About Lung Cancer Screening, includes a comprehensive guidebook and documentary video. Later this year, public service announcements will be distributed for nationwide broadcast to air during National Lung Cancer Awareness Month in nov. Those spots will feature the grandson of Jesse Owens, Olympic gold medalist in the 1936 Berlin Olympic games and later, a lung cancer patient.
Presented by LCRF, the program will be distributed, in part, through the AMEC IHC at its meeting of Health Directors worldwide on junio 25 and 26 and on their website amechealth.org on junio 28. The program’s 12-minute documentary video features oncologist Dr. Marjory Charlot of UNC Chapel Hill, two Black lung cancer patients’ stories of their journeys, and two members of Jesse Owens’ family: his daughter, Marlene Owens Rankin, and her son, Stuart Rankin. That video, along with the downloadable guidebook, will be available free of charge online at LCRF.org/KnowYourRisk as well as the AMEC IHC website.
“We are delighted to partner with the AME IHC on this very important health issue,” said Dennis Chillemi, Executive Director, LCRF. “Working together to build trust and improve the understanding of lung cancer and its effect on the Black community is key to improving health equity.”
“The role of the AMEC IHC is to bring much-needed health information to our congregations; to bridge the gap between people with health concerns and the healthcare community; and to break down the barriers in access to health care,” said Reverend Dr. Miriam Burnett, Medical Director, AMEC IHC. “Partnering with LCRF gives our community critical information that could save lives of Black Americans with lung cancer.”
This program is funded in part by Bristol Myers Squibb, as part of its initiative to address racial inequities in healthcare. Additional support is provided by grants from Novartis, Pfizer, Lilly, AstraZeneca and Genentech, a member of the Roche Group.
- American Cancer Society, Cancer Facts & Figures for African Americans 2019-2021
- Centers for Disease Control & Prevention, Division of Cancer Prevention and Control
About the AME Church International Health Commission (AMEC IHC)
The AME Church is aided in its mission by its own International Health Commission (IHC), which has the duty and responsibility to address health, wellness, education, and prevention. The IHC serves, among other tasks, to help the denomination understand health as an integral part of the faith of the Christian Church, to seek to make our denomination a healing faith community, and to promote the health concerns of its members. One way to accomplish this is by forming collaborative relationships with international, national, state, county, and city health programs, as well as health associations and community agencies. Our motto is A Ministry That Cares Always, Helps and Assists Those in Need Through Prevention, Prayer and Education. For more information, visit amechealth.org.
Dr. Joan Schiller, chair of LCRF’s Scientific Steering Committee, joined us for #TogetherSeparately on junio 17 to discuss How Air Quality Can Affect Lung Cancer. Watch the recording below.
The Lung Cancer Research Foundation (LCRF) is excited to announce a partnership with leading lung cancer patient advocacy group, the EGFR Resisters. This multi-year partnership will kick off on junio 6, National Cancer Survivors Day, in a joint effort in 2021 to fund research related to EGFR positive lung cancer.
People with EGFR positive lung cancer represent a significant number of patients diagnosed with non-small cell lung cancer. Approximately 10-15% of patients with non-small cell lung cancer in the United States and 35% in Asia have an EGFR positive mutation. In the U.S., more than 20,000 people are diagnosed with EGFR positive lung cancer each year. Although there has been an increase in progression-free survival in patients due to targeted therapy with EGFR TKIs (Tyrosine Kinase Inhibitors, commonly known as TKIs), the cancer eventually develops acquired resistance which means more research is desperately needed.
Hear LCRF Scientific Advisory Board chair Dr. Katerina Politi explain why this research is so important:
LCRF has a history of funding important work related to EGFR, including that of Dr. Matthew Meyerson from Dana-Farber Cancer Institute, whose early work, funded through LCRF, led his group to discover the EGFR mutations in lung cancer, which set the stage for the field of genome-targeted therapy.
The goal of the EGFR Resisters is to improve outcomes for people with EGFR positive lung cancer by accelerating research. Their ultimate objective is changing EGFR positive lung cancer into a manageable chronic disease.
“We are thrilled to work with the EGFR Resisters,” said Dennis Chillemi, LCRF Executive Director. “Partnering with this extraordinary group no doubt allows us to better understand this particular mutation and acquired resistance to first-line therapy for these patients. We are confident that this partnership will accelerate research discovery and save lives.”
NEW YORK, junio 2, 2021 – The Lung Cancer Research Foundation (LCRF) is pleased to welcome two new members of its Board of Directors, Colleen Conner Ziegler and Bruce Dunbar.
Colleen Conner Ziegler has recently joined the LCRF Board of Directors. She is a lung cancer survivor and active patient advocate, diagnosed in may 2015 at the age of 58 with Stage IV ALK positive Non-Small Cell Lung Cancer. She began, and is currently receiving, Alectinib as her first line of treatment and recognizes that research has made her treatment possible.
After a 22-year career in the pharmaceutical industry, Ms. Conner Ziegler served in a variety of community-focused endeavors, including service on several Boards of Directors and Advisory Boards. Her primary focus prior to her diagnosis was on children’s education as well as woman’s health issues.
Following her lung cancer diagnosis, she turned her focus to lung cancer advocacy. Her advocacy work includes:
- Founding member of Life and Breath (LAB), a grass root lung cancer organization, with the goal of raising awareness of lung cancer as well as funding for research
- Founding member of ALKFusion, a patient driven organization whose vision is to initiate and support patient-centric research
- Currently active ALKFusion representative, Lung Cancer Action Network member, LCRF Strategic Plan Taskforce member
- Participated in the Department of Defense Lung Cancer Research Program
- Volunteered with the Lungevity Peer-to-Peer mentor program that connects newly diagnosed patients with a mentor to guide them through their diagnosis and treatment
- Participated in patient focused videos and print materials on lung cancer diagnosis, advocacy and living with lung cancer and Genentech’s ALK Positivity Project
- Volunteered with GO2 Foundation’s annual Voices Summit
- Co-authored and presented Patient Advocacy poster at the 2019 World Conference on Lung Cancer, Barcelona, Spain
Ms. Conner Ziegler lives in Rochester, New York with her husband, Tom, and their daughter Taya.
Bruce Dunbar has joined the LCRF Board after being involved with the organization since his diagnosis with Stage IV Non-Small Cell Lung Cancer in 2017. As a direct beneficiary of lung cancer research, Mr. Dunbar is an active advocate for further efforts to improve screening, detection and treatment. In addition to his involvement with LCRF, he serves as a Consumer Reviewer for the Lung Cancer Program of the Congressionally Directed Medical Research Program and advocates for federal funding for lung cancer research through the GO2 Foundation’s annual Voices Summit.
Mr. Dunbar’s career spans more than 30 years in a variety of corporate communications, marketing and advertising roles including serving as Senior Vice President and Director of Corporate Communications for OppenheimerFunds, Inc. and Managing Director, Head of Wealth Management Communications, for Morgan Stanley. He also held senior client advisory roles at Teneo and Finsbury, Glover, Herrington and is currently a partner in communications advisor Coppertop Media.
Mr. Dunbar received an AB in History from Princeton University and an MBA from Columbia University’s Graduate School of Business.
“We are delighted to welcome both Ms. Conner Ziegler and Mr. Dunbar to the LCRF Board of Directors,” says Dennis Chillemi, Executive Director. “Their patient experience, passion for research, personal philanthropy, and many connections within the lung cancer community will bring a more diverse perspective to LCRF as we continue to bring hope to the lung cancer community through research.”
To learn more about LCRF and its Board of Directors, visit www.LCRF.org/board.
May is:
Women’s Health Month
National Cancer Research Month
- Watch this month’s #TogetherSeparately livestream with Dr. Isabel Preeshagul on Women & Lung Cancer, and read about previous livestream topics
- Learn the facts about Women & Lung Cancer
- Sign up for Kites for a Cure, talking place junio 26; or Free to Breathe Walk on octubre 2
- Join the Lung Cancer Community Facebook group
- Follow LCRF on Facebook, Twitter, Instagram and LinkedIn.
We are #TogetherSeparately™
When you think about a typical lung cancer patient, what does that person look like? If, like many people, you immediately imagine an elderly man, you are missing the full picture.
The reality is that lung cancer is the leading cause of cancer death in women. Lung cancer takes more women’s lives each year than breast cancer, uterine cancer, and ovarian cancer combined. Many of them are non-smokers, and even never-smokers.
That’s why it’s important to know the facts about lung cancer and its impact on women. Learn the statistics and meet some of the women who have shared their experiences as patients.
May is Women’s Health Month, and LCRF invited Dr. Isabel Preeshagul to present #TogetherSeparately: Women & Lung Cancer on may 19. Watch the livestream below:
“I didn’t think cancer could happen to me at age 29,” said Elizabeth Moir in a recent article published by Women’s Health magazine. Elizabeth was in the third trimester of her second pregnancy when she woke up with severe chest pain and rushed to the ER. She was diagnosed with calcified granuloma, a small, noncancerous spot of inflammation, and gave birth to a healthy baby girl two months later.
Getting back in shape proved to be difficult, and Elizabeth was alarmed when she started coughing blood. She was referred to a pulmonologist.
“After a bunch of tests, scans, and a second opinion, I was diagnosed with stage IV lung cancer that had spread to my liver and my bones,” Elizabeth said. Testing revealed that her cancer had the ALK mutation, which meant she was a candidate for targeted therapy. She began taking a pill that stops the spread of cancer cells by blocking the action of the mutation.
In julio 2019, she had a scan which showed no evidence of disease. Because research led to the discovery of targeted therapies like the one she’s on, she is “back to living a pretty normal life.”
“I want young women to understand how important it is to be your own advocate and take your health seriously—because I didn’t.”
Read the full article here.
Dr. Isabel Preeshagul joined #TogetherSeparately on may 19 to lead a discussion on Women & Lung Cancer. Watch the recording below.
By Cyndi Berzow
It’s been a little over two months since my incredible father left us, and it is hard to understand if it is getting easier. I find myself scrolling constantly through our texts and reliving our loving father/daughter relationship, our funny banter, reading his words and being able to feel his desire to continue to live life and conquer all the punches that this cancer was throwing at him with determination and wit.
It was Labor Day weekend 2018 when my father called me to tell me he had been diagnosed with small cell lung cancer. He broke down on the phone as he tried to get the words out and then started our journey as a family to help him not only beat this but also come to terms with living with cancer. It’s a strange thing to support someone living with cancer. In many ways it is monumental, significant and upsetting – and at the same time, life goes on and the meds and the treatment become woven into your existence almost like you forgot what it was like without it.
My dad incorporated treatment as a way of life. Marty’s kind, funny and easy-going nature was palpable, and he became fast friends with the nurses and doctors that were helping him weekly. He was almost like a celebrity, walking through the infusion center at Hudson Valley hospital, with my mother by his side every treatment (until COVID restrictions prevented that). He became used to the sleepless first night after chemo, the aches and pains, the ups and downs of the doctor appointments. He took it all in stride with a survivor mentality. The smartest of men, he understood exactly what was happening to him and that mind over matter was how he was going to get through this.
In noviembre 2020 he got a clean bill of health; chemo had him in the clear and radiation had worked on the last two tiny tumors – we were elated. We celebrated all the wins, because even the smallest was a huge feat. Nothing prepared us for what was to come and suddenness of losing the rock of our family.
A bleed within a mass in his brain came out of nowhere. He didn’t sound right, his voice was soft, his words not as clear. The hospital during COVID was the last place anyone wanted to be, but it was imperative. My dad being my dad, drove himself to the emergency room. No one was allowed to be with him because of the pandemic. He Facetimed me in his gown and I wish with every part of my being that I knew that would have been the last real conversation we had. He had suffered a stroke.
My mom, brother and I spent the next two weeks taking turns spending every second we were allowed with my dad. We had every reason to believe he would recover and go to rehab and we would look back on this as a family as another hardship that we conquered. The roller coaster of a prognosis was torture and the reality of what was to become of life without my dad was unimaginable. As a family we honored his wishes. We played his favorite music, I put the Mets classic games on the television, and we even got a message from the legendary New York Giant Carl Banks to tell him how undeniably amazing he was.
Dad, I’ll never forget
I held your hand with my head on your shoulder as it always was, and I know you know I was there as you passed. Every part of who I am is because of you. Your kindness, your humor, your passion for music and astronomy. The smartest man with the biggest most patient heart. You sacrificed so much for me growing up so I could have everything you wanted for me. You are the definition of unconditional love. I told you every single day how much I loved you and adored you. I am so lucky to have had you for as long as I did. Rest in Peace, we will see you again my wonderful, amazing, loving, kind and incredible father. We will miss you forever.
I got you.
I love you the most.
I love you forever.
To view Marty’s digital plaque or add a memorial for a loved one who has passed, please visit LCRF’s In Memoriam page.