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Study aims to build a comprehensive, open-source database of heritable genetics and patient-reported data in lung cancer

New York, NY (July 25, 2024)—The Lung Cancer Research Foundation (LCRF), in collaboration with 23andMe Holding Co. (Nasdaq: ME), a leading genetic health and biopharmaceutical company, and 20 lung cancer advocacy organizations, today announced a new study to help advance research in lung cancer. The focus of the Lung Cancer Genetics Study is to better understand the genetics of people with lung cancer in order to improve detection, risk reduction, and care. While recent developments in tumor genetic testing and targeted therapies have provided hope and years of survival to many lung cancer patients, lung cancer remains the number one cause of cancer deaths in both men and women in the United States. Yet, much remains unknown about the disease and its causes.

“It is powerful to see the entire lung cancer community unite behind the Lung Cancer Genetics Study,” says Aubrey Rhodes, LCRF executive director. “Understanding genetic factors associated with lung cancer, and enabling researchers worldwide to securely access the data, will go a long way to improving early detection and treatment outcomes. LCRF is proud to be a part of what will certainly be an important initiative for lung cancer research.”

The de-identified data from the study will be made available to approved researchers, and access to the scientific database will be available to nonprofit researchers and institutions at no cost.

Sobering lung cancer statistics only tell part of the story

Despite advances in treatment options, lung cancer remains a critical area of unmet need:

  • In 2020, lung cancer took more lives in the United States than breast, colorectal, and prostate cancers combined.
  • One in 16 people in the United States will be diagnosed with lung cancer in their lifetime.
  • It is estimated that in 2024, 234,000 new people will be diagnosed with lung cancer in the United States.
  • While lung cancer accounts for 12% of all new cancer diagnoses, it accounts for 20% of cancer deaths.
  • Despite being the deadliest cancer, lung cancer research is underfunded compared to other cancer types.
  • Early detection of lung cancer through screening can dramatically improve the long-term survival rate. Only 25% of all people diagnosed with lung cancer will survive 5 years or more, but for those whose cancer was diagnosed through annual screening by CT scan, the 20-year survival rate is 81%.
  • In people diagnosed at 55 years of age or younger, lung cancer is more common in women than men. Among people with lung cancer who have never smoked, approximately two-thirds are women, making women who have not smoked more than twice as likely to develop lung cancer as men who have not smoked.

Behind every devastating statistic are people from communities across the U.S. impacted by lung cancer. Through this collaboration, LCRF and other advocacy organizations, lung cancer survivors and advocates, and 23andMe hope ultimately to help advance research toward finding a cure for this disease.

“LUNGevity Foundation is excited to partner on this community-driven project,” said Upal Basu Roy, Vice President of Research at LUNGevity Foundation. “As a researcher and a patient advocate, I’m most excited about how the data collected in this study could be leveraged to help patients in the future. For example, it could help researchers identify new drug targets and mechanisms for drug development or find ways to address side effects proactively.”

This study includes the following collaborators: ALK Positive, Biomarker Collaborative, BRAF Bombers, EGFR Resisters, Exon 20 Group, Free ME from Lung Cancer, GO2 for Lung Cancer, The Happy Lungs Project, International Cancer Advocacy Network, KRAS Kickers, Lung Cancer Foundation of America, Lung Cancer Research Foundation, LUNGevity Foundation, MET Crusaders, NTRKers, Oncogene Cancer Research, PDL1 Amplifieds, RET Positive, RET Renegades, The ROS1ders, and Troper Wojcicki Philanthropies.

“Studying the genetics of lung cancer can help us understand risks, improve early detection, and develop better treatments. This collaborative effort unites patients, advocates, doctors, and researchers,” said Jill Feldman, patient advocate and co-founder of the EGFR Resisters. “By making the data securely accessible to researchers worldwide, the Lung Cancer Genetics Study increases our chances of breakthroughs that can save lives.”

Enhancing lung cancer research

The 23andMe research platform will enable consented participants to come together to provide critical data for scientists studying lung cancer. Research data will include genetic information and self-reported information about each participant’s unique experiences (using responses from online surveys), as well as additional data sources such as medical records and tumor biomarker information. Through this study, advocacy organizations, advocates, and 23andMe aim to enhance research into lung cancer by bringing together a large group of people to better understand how genetics may influence lung cancer, expanding the geographic reach of the research study by enabling participation from home, and removing some of the time and cost barriers that can slow progress.

How this study can help further research

The goal of the study is to recruit 10,000 people who have been diagnosed with lung cancer, with no restrictions on the type of lung cancer, stage of disease, gender, smoking status, biomarker, or other variables. The lung cancer genetics study is recruiting individuals who are 18 years or older, live in the United States, and have been diagnosed with lung cancer. Participants in the study can receive the 23andMe kits at no cost.

“Through the launch of the Lung Cancer Genetics Study, we hope to fill an unmet need for a comprehensive database that bridges the gap between genetic, clinical, and patient-reported data,” said Anne Wojcicki, Co-Founder and CEO of 23andMe. “Because lung cancer affects people from all communities, it’s important for this research to truly reflect the diversity of those impacted by the disease. This collaborative effort unites survivors, caregivers, researchers, and advocates who are all dedicated to improving the treatment and care of lung cancer.”

The Lung Cancer Genetics Study is made possible by support from Troper Wojcicki Philanthropies (TWP). Troper Wojcicki Philanthropies deploys philanthropy and mission-related investments to organizations that are accelerating cancer research, tackling climate change, and advancing human rights. Since 2006, TWP has committed more than $100M to researchers, academics, and entrepreneurs committed to making a positive impact on the world. For the last 15 years, 30% of TWP’s funding has been dedicated to advancing cancer research.

For more information on the study, please see the Lung Cancer Genetics Study landing page.

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About the Lung Cancer Research Foundation (LCRF)
The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 419 research grants, totaling nearly $44 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information about the LCRF grant program and funding opportunities, visit LCRF.org/research.

About 23andMe
23andMe is a genetics-led consumer healthcare and biopharmaceutical company empowering a healthier future. For more information, please visit www.23andMe.com.

Contact:
LUNG CANCER RESEARCH FOUNDATION
Sheila Sullivan
Sr. Director, Marketing & Communications
ssullivan@lcrf.org

Posted in Announcements, ResearchTagged , ,

Our science team offers an overview of the three lung cancer studies presented at the ASCO Annual Meeting’s plenary session, and an update on this year’s Research Advocates program. Watch the video below.

Featured:
Aubrey Rhodes, LCRF Executive Director
Dhru Deb, PhD, Senior Director, Research & Administration
Antoinette (Toni) Wozniak, MD, Chief Scientific Officer

Posted in Executive Director Updates, ResearchTagged ,

The good news

The 5-year outcomes of the CROWN trial were presented at the annual American Society of Clinical Oncology (ASCO) meeting with results showing the longest progression-free survival in anaplastic lymphoma kinase positive (ALK+) non-small cell lung cancer (NSCLC) to date.

Why it’s important

The standard of care for the first-line treatment of patients with advanced ALK+ lung cancer is an ALK tyrosine kinase inhibitor (TKI). Lorlatinib is a third generation ALK-TKI. The CROWN study is a Phase 3 trial in which 296 ALK+ patients received crizotinib, a first generation ALK-TKI, or lorlatinib.

The initial results of the trial showed that lorlatinib was superior to crizotinib1 and it is FDA approved for the treatment of metastatic ALK+ NSCLC. The update presented at the ASCO meeting revealed that after 5 years of follow-up, the median time of disease control or progression-free survival was not yet reached for lorlatinib and was only 9.1 months for the patients treated with crizotinib. At 5 years, 60% of the patients receiving lorlatinib still had no progression of their disease. Loratinib also demonstrated both superior control of existing brain metastases and a reduction in the eventual development of brain metastases.2

What It means for patients

Lorlatinib is very effective in the treatment of patients with advanced ALK+ NSCLC. Of importance is its ability to control existing brain metastases and prevent the development of new central nervous system disease. There were no new side effects of concern related to the longer time on treatment. Side effects associated with lorlatinib treatment can include increased cholesterol and triglycerides, weight gain and cognitive effects among others. Patients should always discuss risks and benefits and options for treatment with their oncologist.

What to look for

Progress is being made in the treatment of metastatic ALK+ NSCLC. Unfortunately, these new advancements do not represent a cure for the vast majority of patients. It is very important to determine how cancer cells develop resistance to treatment. Look for new research in overcoming resistance and novel approaches to treatment.

  1. Shaw A, New England Journal of Medicine, 2020
  2. Solomon B, Journal of Clinical Oncology, doi:io.1200/JCO.24.00581, 2024
Posted in Research, Science Made SimpleTagged , ,

It is with great sadness that we learned of Laura Greco’s passing on July 14, 2024.

Laura was a self-described fighter and lung cancer activist, determined to take on her disease while working to increase funding for lung cancer research. She served as a lung cancer research consumer reviewer on the Congressionally Directed Medical Research Program (CDMRP) and many lung cancer advocacy organizations in multiple capacities. Her commitment to educating elected officials, the medical community, and the community at large was second only to her commitment to her family.

Laura’s “Die, Cancer, Die” campaign in 2022 rallied the lung cancer community, supporting her desire to defeat the disease that had invaded her brain while continuing to remind people that all you need to get lung cancer is a pair of lungs. Laura continually told her story to underscore this fact and to contribute to improving general awareness of lung cancer and the huge disparity in lung cancer research funding compared to other, less deadly, cancers.

LCRF was one of many beneficiaries of Laura’s energy and determination.

The lung cancer community has lost a champion, and she will be missed by so many. We send our condolences to her husband, her sons, and all who loved her.

October 2022

Social media declaration inspires a movement: Die, Cancer, Die!

Laura Greco is facing a nemesis that has threatened her numerous times. And she has made her beef public, emblazoning her bold intention towards her enemy right across her chest.

Laura has lung cancer. On September 23, 2022, she put on the outfit she has worn for every first day of treatment since 2018: a simple black t-shirt with the words, “Die, Cancer, Die!” across the front. Then she began her third assault on a brain tumor that has refused to go away.

 “It seems like the third time is the charm for me,” Laura noted. “This is my second brain radiation therapy on this tumor. And, I’ve had a brain surgery to try to remove it. I’ve nearly died twice, saved by my husband both times. And, I keep fighting. I’m still here.”

To mark that first of six rounds of radiation, she posted a photo of herself on Twitter with the caption “Really pumped up to kill my cancer today. Die Cancer, Die!” To Laura’s surprise, the tweet took off – 30,000 likes, more than 800,000 views, and shared nearly 1,000 times within a few short days. She saw an opportunity to raise awareness that anyone with lungs can get lung cancer, and, maybe, raise a few dollars for research in the process.

As a seven-year lung cancer survivor under the age of 50 with no risk factors for the disease, Laura knows how important it is to spread the word that anyone with lungs can get lung cancer. The mom, wife, and lawyer from Saratoga Springs, NY, has become a full-time advocate for lung cancer awareness and funding for research.

Visit DieCancerDie.org

“Among the many things I have learned over the last seven years: we deserve better, and we should get better – better attention, better treatment, better survival, and it is only with more research that we will get there. The cure is out there, and we just have to fight for it. It is up to us to advocate for ourselves, to fight for recognition at all levels of government, all levels of society. People need to know that they don’t need to be ashamed of their diagnosis and they matter.”

By raising her voice and sharing her fight, she has given lung cancer survival a national platform – all while under treatment. “I wanted to focus on living and do more advocacy. God put me on this earth to be the beacon for other people with this disease and show them that we can survive it.”

Determined to come out on top

Laura is determined to defeat her tumor. She simply will not allow it to defeat her. “I have lost many friends, and they say it just takes one tumor to kill you. I will not allow that to happen. This is the time that I am going to kill it before it kills me.”

Her journey to this point has been harrowing at best. The mass in her lung led to an initial diagnosis in 2015 of Stage 3A non-small cell adenocarcinoma lung cancer, driven by a translocation within the ALK gene. At that time, the targeted therapy, alectinib, was not yet approved by the FDA for first-line treatment. She was prescribed two rounds of chemo concurrent with six weeks of radiation, followed by surgery to remove the mass in her left lower lung.

“The results weren’t great. I was 40 and had young kids. I kept asking, what can you do for me. I have young kids. I refuse to die. The answer was to do four more rounds of chemo to ‘mop up’ any remaining cells. So, I did.”

Laura did four rounds of chemo and went back to her law practice. The next year had its ups and downs. Laura began having headaches, so she convinced her general practitioner to get her a head and neck MRI – that showed more than 10 tumors in her brain. She was able to start on alectinib days after it received breakthrough designation from the FDA but eventually experienced liver toxicity from the treatment. Going off it only caused the brain tumors to grow back and increase in number. She started back on alectinib and eventually increased to a 150% dosage, but one or two of the tumors continued growing.

In the summer of 2018, Laura had her first round of brain radiation.

Navigating a new reality

“I started to feel worse, but I continued to live my life. I was traveling and fitting in brain mapping and the radiation treatment between trips. Things really went sideways in 2019.”

Unbearable head pain highlighted a new reality. The cancer in Laura’s brain was causing swelling and edema. At the recommendation of her medical team, she waited for the situation to improve on its own. It didn’t. Ultimately, Laura had an emergency brain surgery in early November of 2019, which led to two further surgeries.

Around that time, an actionable MET amplification was discovered in her ALK-driven lung cancer. She was the first to be prescribed a two-drug combination of alectinib for ALK and capmatinib for the MET amplification.

“I remained on the two-drug combo, but in the fall of 2020, it started to show signs that it was no longer working fully. They wanted to do an ALK drug plus chemo. I refused. Chemo doesn’t do much for the brain and it really reduces my quality of life. We agreed to radiating the four growing tumors along with the two-drug combo. It worked for a little over a year.”

Laura sledding with her kids

In early 2022, Laura was scheduled for surgery because the tumor on the left side of her brain had grown. As a “Hail Mary” move, her alectinib dose was increased to 150% for 10 days ahead of the procedure. She was in pre-op when the surgeon announced that she didn’t need surgery that day; her scans showed significant reduction in the tumor that was scheduled for operation. She went home and went sledding with her kids to celebrate. Unfortunately, she had a seizure in April, after which she was scheduled to have some of her tumors surgically removed.

“It turned out that one of the tumors had the ALK mutation. That was completely resected. The other had a completely different genetic makeup. It was MET and EGFR amplified and was so intertwined with my motor function that to remove it would cause me to possibly lose the use of my hand. So, they didn’t get all of it. My ALK tumor was resistant to alectinib at this point, so the next drug to take would have to be loratinib. So, I suggested we test loratinib with capmatinib.”

Laura experienced a severe toxic reaction to loratinib – she lost her ability to speak coherently and to read. “It was the worst time of my life,” she said. It took 15 days for the drug to clear her system. She has lingering effects to this day. “With several dose reductions and hard work with a speech therapist, I have experienced significant improvement.” Laura was stable until about a month ago, when she had another seizure. Another scan showed more edema and growth in the MET-EGFR tumor.

“This is why I am getting radiation now – and that tumor has got to die.”

Laura is determined to beat her tumor, while continuing to advocate for more research funding, and living her life.

“Cancer is a thief, and we need to not let it be. We need to grasp the joy of living and realize how it can free us, too. By choosing to have this attitude, by knowing that the side effects can be managed, I can live with that. I am choosing to fight, and I will win.”

Learn more about Laura’s #DieCancerDie campaign at diecancerdie.org.

Posted in People, RememberingTagged

This May, Danyelle Shapiro and Ashley Katzen hosted their 7th annual Purple & White Fight Night in Boca Raton, FL. The two women started the event in 2014 in memory of Ashley’s mother, who died of pancreatic cancer at age 54, and Danyelle’s father, who lost his life to lung cancer at age 41.

Proceeds are divided evenly between the Lung Cancer Research Foundation and the Hirshberg Foundation for Pancreatic Research. This year’s event raised about $80,000.

The collaboration between Ashley and Danyelle was sparked by the impact cancer has had on their lives and the grim survival statistics for each disease. Their personal message is simple yet passionate: “Awareness is hope, and hope never quits!”

Dr. Estelamari Rodriguez from Sylvester Comprehensive Cancer Center attended the event and spoke on behalf of LCRF and the lung cancer community.

Ashley and Danyelle
Silent auction
Dr. Rodriguez
Posted in Fundraise Your Way, FundraisingTagged

Kathryn A. O’Donnell, PhD to lead Scientific Advisory Board

NEW YORK, NY (July 1, 2024) – The Lung Cancer Research Foundation (LCRF) is pleased to announce the appointment of Kathryn A. O’Donnell, PhD as its new Scientific Advisory Board (SAB) chair, effective July 1, 2024. Dr. O’Donnell succeeds Katerina Politi, PhD, who has served as chair of LCRF’s SAB since 2019.

Kathryn (Kate) O’Donnell, PhD, is an Associate Professor in the Department of Molecular Biology at UT Southwestern Medical Center and co-leader of the Development and Cancer Program in the Harold C. Simmons Comprehensive Cancer Center. She received her B.S. in genetics from Cornell University and her PhD in human genetics from Johns Hopkins School of Medicine, working with Chi Dang on the functions of the MYC oncogene, one of the most important drivers of human malignancy. Following graduate school, she joined Jef Boeke’s laboratory at Johns Hopkins and developed innovative approaches to identify genes that contribute to cancer and may represent new therapeutic targets.

In 2011, Kate was recruited to UT Southwestern Medical Center as an Assistant professor in the Department of Molecular Biology and a Cancer Prevention and Research Institute of Texas (CPRIT) Scholar. Since establishing her independent laboratory, Dr. O’Donnell has made important contributions to our understanding of cancer initiation and progression. She has discovered new cancer genes, including oncogenic cell surface proteins that may be targetable with therapeutic antibodies. Her current work is focused on understanding the mechanisms that contribute to lung tumor development, the regulation of immune checkpoint pathways, and applying insights from these studies towards the development of new therapies for lung cancer. Dr. O’Donnell has served as a member of LCRF’s SAB since 2022.

“I am thrilled and honored to chair LCRF’s Scientific Advisory Board and I look forward to working with my colleagues on the Scientific Advisory Board, the Board of Directors, and the amazing staff and leadership at LCRF to continue funding exceptional lung cancer research,” said O’Donnell.

“We are excited for Dr. O’Donnell to take the reins of the SAB from Dr. Politi,” remarked Aubrey Rhodes, LCRF’s executive director. “Dr. Politi leaves big shoes to fill. Her leadership has made LCRF’s research program what it is today – funding innovative research with the greatest potential to address unmet need and improve outcomes for the lung cancer community. Her efforts were integral in developing several multi-year, multi-million-dollar research partnerships that have accelerated the pace of lung cancer research. Under her leadership, the SAB developed a long-term vision through strategic planning and its research roadmap, which guides the foundation’s research investments. She has also strived to increase the diversity of the SAB. We’re grateful for her service and are especially thankful that she will remain on our SAB and Board of Directors, assuring a smooth transition for Dr. O’Donnell into her new role.”

Katerina Politi, PhD, Professor of Pathology and Internal Medicine at Yale School of Medicine, has led LCRF’s SAB for five years, overseeing the funding of more than $11 million in lung cancer research grants as well as the development of LCRF’s Research Roadmap and the founding of the organization’s Research Advocates volunteer group. She is a celebrated researcher herself, and a past beneficiary of LCRF’s early investigator grant awards, which provide her a unique perspective on both the process and the impact of early funding on a scientist’s career. Dr. Politi continues as a mentor to other researchers and a partner to LCRF’s board and staff.

“Dr. O’Donnell is an excellent scientist and will continue to build upon LCRF’s legacy of supporting lung cancer researchers and novel, innovative research ideas,” said Dr. Politi. “I’m confident that she will lead the SAB to achieve LCRF’s research priorities and improve outcomes for people with lung cancer.”

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About the Lung Cancer Research Foundation (LCRF)
The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 419 research grants, totaling nearly $44 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information, visit LCRF.org.

Contact:
Sheila Sullivan
Sr. Director, Marketing & Communications, LCRF
ssullivan@lcrf.org

Posted in Announcements, Women & Lung CancerTagged , ,

Drs. Benjamin Levy, Antoinette (Toni) Wozniak, and Isabel Preeshagul discussed the news from this year’s ASCO Annual Meeting – a premier scientific event for oncology professionals, patient advocates, industry representatives, and the media.

ASCO, or American Society of Clinical Oncology, is a leading organization for health care professionals involved in the care of cancer patients. Watch the video below.

Posted in Together SeparatelyTagged , ,

It is with heavy hearts that we share the passing of an incredible member of our community, Ivy Elkins. The impact that Ivy has had on the lung cancer community cannot be adequately expressed in words. She touched so many people’s lives, both directly and indirectly, through her tireless advocacy for patients.

Whether through her official capacity as co-founder of the EGFR Resisters, or through her representation of lung cancer patients with the Department of Defense CDRMP, the NIH, and countless advocacy groups, Ivy was able to connect with others in a way that brought hope to the fore. She was instrumental in spearheading numerous fundraisers for lung cancer research. Ivy was also one of the people we counted on to host discussions that helped tie lung cancer research to its impact on people. She helped to forge connections between researchers and the beneficiaries of the research, always focused on the human element of advancements being made.

Her influence on lung cancer research and the lung cancer community will be felt for years to come. She will be sorely missed by us all.

Posted in RememberingTagged

Scalora Consulting Group‘s Helping Hand Fund golf tournament took place June 7, 2024, at the Red Tail Golf Club in Devens, MA and we are so excited to announce that they raised $55,000! Scalora Consulting Group’s Helping Hand Fund partnered with Related Beal to act as the lead sponsors for this event benefiting the Lung Cancer Research Foundation in loving memory of Jennifer Zannini-Cipriani.

Thank you so much to all the supporters, volunteers, Red Tail Golf Club staff, guests, players, and of course to the event sponsors without whom this event wouldn’t be possible: Scalora Consulting Group, Related Beal, Professional Electrical Contractors of CT, Inc., Consigli Construction Co., Inc., HGA, Suffolk Construction, Needham Bank, The Whiting-Turner Contracting Company, Columbia, Lawson & Weitzen, LLP, BOND Building Construction, Sterling Construction, Inc., BLOCK Builders, Inc., Erland Construction, and Commodore Builders.

Below are some photos from the event.

Posted in Events, Fundraise Your Way, FundraisingTagged ,