MIAMI, FL, May 13, 2022 — The COPD Foundation is pleased to announce the promotion of Ruth Tal-Singer, Ph.D., to President & Chief Executive Officer of the Foundation.
"The board eagerly endorses Ruth's career progression to CEO in recognition of the vital role she's played in transforming the Foundation into a collaborative patient-centered research, education, global community outreach advocacy organization focused on delivering the Founders' vision on prevention and early diagnosis and treatment of chronic lung disease," said James Crapo, MD, COPD Foundation Board Chair.
Tal-Singer joined the Foundation as a consultant in the role of Chief Scientific Strategy Officer in 2019 and assumed the role of President & Chief Scientific Officer in 2020. Tal-Singer is an internationally recognized expert and leader in respiratory research and the development of therapeutics.
"During Ruth's time as the Foundation's President and Chief Scientific Officer, she designed and deployed COPD360Net®, a digital health and therapeutics accelerator network to advance and implement new treatments. She also brought strategic partners to the Foundation for novel research initiatives and championed patient-centric research during the COVID-19 pandemic to understand the needs of the patient, caregiver, and health care professional in supporting people with COPD and other lung diseases," added Byron Thomashow, MD, COPD Foundation Chief Medical Director.
PIVOT Focuses on the Evolution of Therapeutics Development and Evaluation with a Focus on Treatment Benefit for Patients with Chronic Lung Disease
May 12, 2022 - The COPD Foundation this week unveiled PIVOT, Patient Inspired Validation of Outcome Tools, a patient-centric framework that will support the coordination of activities for developing, validating, and qualifying biomarkers and clinical outcome assessments that evaluate the benefit of treatment approaches in COPD, bronchiectasis, and NTM lung disease.
"The program is an intentional 'pivot' to the future for patients, the Foundation, and academic and industry research partners. PIVOT will establish a conceptual framework that shifts the approach to how lung disease treatments are developed and evaluated," explained Ruth Tal-Singer, PhD, President & CEO of the COPD Foundation.
"While significant strides have been made to improve care for those with COPD, the last regulatory approval of a medicine with a new mechanism of action in COPD was in 2011," she said. "In recent years, we've learned a lot through the regulatory process, patient input, and the successes and learnings from the COPD Biomarker Qualification Consortium (CBQC), which has significantly informed our shift in strategy."
Alan Hamilton, PhD, Senior Director of Research and PIVOT program lead, with extensive clinical, scientific, and operational experience in this field of study, explained that PIVOT is the next evolutionary step toward defining and acting on treatment benefits for patients with chronic lung diseases.
The COPD Foundation is deeply concerned about the humanitarian crisis in Ukraine and surrounding countries and the impact that the ravage of war is having today on millions, including those with lung health issues and other health complications.
While the fear and devastation to the Ukrainian people and their way of life are simply unimaginable, we want to call attention to another devastation that war causes.
As we learned in the aftermath of 9-11, burning buildings, debris, smoke inhalation, and their effects jeopardize lung health. The World Health Organization has also noted the risk of emergence and spread of infectious diseases, which may include COVID-19. Those with lung disease or respiratory symptoms living in Ukraine or the region today are vulnerable and could become the lung health compromised of tomorrow.
The short- and long-term effects of this war on lung health cannot be understated.
We call on global organizations, including the United Nations, the World Health Organization, humanitarian organizations, and all members of the international community, to help protect all victims of this conflict and support the efforts of local organizations such as the European Lung Foundation.
Ruth Tal-Singer, PhD, President & Chief Scientific Officer, COPD Foundation
INNA-051 is being developed to stimulate innate immunity and reduce the incidence and severity of respiratory viral infections, such as COVID-19, rhinovirus, or influenza in populations at-risk of complications that include individuals with COPD.
Sydney, Australia, and Miami, Florida. - 23 February 2022 - ENA Respiratory, a clinical-stage pharmaceutical company developing INNA-051, a first-in-class broad-spectrum antiviral innate immunomodulator for pre- and post-exposure prophylaxis of respiratory viral infections, including COVID-19 in populations at-risk of complications, and the COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease, announced a partnership to develop INNA-051 in people with chronic lung diseases.
In a Phase 1 study, INNA-051 was found to be well-tolerated, and the company expects to release additional data this year. Phase 2 studies to confirm the pan-antiviral potential of INNA-051 are expected to begin soon and include a randomised COVID-19 post-exposure antiviral prophylaxis study and an influenza challenge pre-exposure prophylaxis study.
Respiratory virus infections, especially rhinovirus (the common cold), respiratory syncytial virus (RSV), and influenza, are related to worsening of chronic lung conditions, including chronic obstructive pulmonary disease (COPD) and asthma. Detection of a viral pathogen has been associated with poor outcomes, including worsening symptoms, hospitalization, and a high likelihood of hospital readmission. There is a clear unmet medical need for an intervention that can significantly reduce the incidence of respiratory virus associated with acute exacerbations. With activity independent of the specific viral pathogen and a targeted safety profile compatible with seasonal use, INNA-051 has a profile intended to address this need.
MIAMI, Feb. 8, 2022 - The COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by COPD, bronchiectasis, and NTM lung disease, today announced that Valerie Chang, JD, Risa Stack, PhD, and Mark T. Dransfield, MD, have been elected to the Foundation's board of directors.
"We are delighted to welcome three dynamic new leaders to the Foundation board," said James Crapo, MD, COPD Foundation board president. "Valerie, Risa, and Mark strengthen our board through their expertise and diverse perspectives in lung health, patient advocacy, business development, and medicine. With their addition to our dedicated leadership team, we are better poised to innovate and improve the lives of patients and caregivers across the country," added Dr. Crapo.
Valerie Chang, JD, is the executive director and founder of the Hawaii COPD Coalition and vice-chair of the US COPD Coalition. Ms. Chang has 20 years of active involvement in the COPD community, including participation in the COPD Foundation Patient-Powered Research Network (PPRN), the Coalition for Tobacco-Free Hawaii, and advocating on behalf of COPD and lung health issues. She also partnered with pharmaceutical companies, the American Thoracic Society (ATS), and the American Association of Respiratory Care (AARC) as a patient advocate. Prior to her work in the COPD community, Ms. Chang served as a part-time district court judge in Hawaii.
Leading patient advocacy organizations and professional societies combine efforts to raise awareness of bronchiectasis and its increased prevalence worldwide
United States/Europe/Australia/Asia -- Today, global lung health organizations join together to announce the declaration of World Bronchiectasis Day on July 1, 2022, to raise awareness of bronchiectasis and its increased prevalence in many countries.
Bronchiectasis is a lung disease that affects hundreds of thousands of people worldwide. It is characterized by enlarged or scarred airways that cannot clear mucus properly, resulting in recurring lung infections. Bronchiectasis creates a significant burden on patients and their families. It can lead to accelerated lung function loss resulting in long-term disability and premature death. The disease can occur at any age, though most people are diagnosed later in life. Although there is currently no cure, detecting and treating bronchiectasis early can improve quality of life and may impact the longevity of those affected. While bronchiectasis is often referred to as a rare disease, prevalence is increasing globally.
"By supporting World Bronchiectasis Day, global partners are committed to addressing the critical unmet needs of the bronchiectasis lung disease community," said Ruth Tal-Singer, PhD, COPD Foundation President & Chief Scientific Officer.
World Bronchiectasis Day is being organized by an international planning committee co-chaired by Tim Aksamit, MD, Medical Director, Bronchiectasis and NTM 360 at the COPD Foundation, and Professor James Chalmers, EMBARC Chair and British Lung Foundation Chair of Respiratory Research, University of Dundee. Representatives from global patient advocacy organizations and professional societies serve on the organizing committee.
The first global organizations to join World Bronchiectasis Day include:
"Bronchiectasis has been a neglected disease, and the lack of awareness causes difficulties and distress to many patients," said Professor James Chalmers. "We have made great advances in the past 10 years, but there is a lot more to do in research and in raising awareness of the condition. We are supporting World Bronchiectasis Day as part of our ongoing commitment with global partners to tackle this neglected disease."
Lynn Schnapp, MD, president of the American Thoracic Society, added: "Currently, in about 40 percent of cases, the cause of bronchiectasis is unknown. That is 40 percent too many. Our patients deserve better. By partnering with other global societies, it is our intention to amplify awareness around this disease to improve the lives of patients worldwide."
"We are motivated to work with other leading global lung health organizations as part of World Bronchiectasis Day to increase awareness about bronchiectasis worldwide," said associate professor Lucy Morgan, Board Chair, Lung Foundation Australia, and chair of the Australian Bronchiectasis Registry. "We're also committed to further understanding the impact of bronchiectasis on adults and children in Australia while striving to improve their quality of life and equitable access to evidence-based therapies," she added.
Watch these first-hand stories of people and families living with bronchiectasis. Visit the European Lung Foundation.
To learn more about bronchiectasis, events leading up to and on July 1, a list of collaborating organizations, and information about supporting the annual World Bronchiectasis Day, visit worldbronchiectasisday.org.
About World Bronchiectasis Day
World Bronchiectasis Day, July 1, 2022, aims to raise global awareness of bronchiectasis and help those with the disease and others yet to be diagnosed through education, advocacy, and a global conversation focused on reducing the burden of bronchiectasis for patients and their families worldwide. Learn more by visiting worldbronchiectasisday.org.
Miami, Fl., Jan. 5, 2022 – The COPD Foundation, a patient advocacy and research organization, and Wellinks, a digital health care company offering the first-ever integrated, virtual chronic obstructive pulmonary disease (COPD) management solution, today announced a partnership to recruit eligible patients for a new research study through the Foundation’s COPD Patient-Powered Research Network (COPD PPRN).
Researchers plan to enroll between 100 and 150 adults with COPD for a 24-week prospective research study of the Wellinks solution. Wellinks combines virtual pulmonary rehabilitation, personalized health coaching, and monitoring through connected devices using a patient-friendly app.
The study aims to determine whether Wellinks can improve outcomes for patients with COPD by measuring the impact on health-related quality of life, health care resource utilization, and participant satisfaction. Impact will be assessed alongside additional measures such as pulmonary function and symptoms. The study is also designed to assess the engagement and utilization patterns of participants over time and in relation to adjustments in the program.
"We are passionate about ensuring that people with COPD have access to the best treatment options available," said Ruth Tal-Singer, PhD, President and Chief Scientific Officer of the COPD Foundation. "We are excited to use our COPD PPRN to recruit individuals to assess this novel COPD management program. Especially after COVID-19, the Wellinks platform could be impactful in helping patients manage their health, and we look forward to learning more through this study."
COPD is the third leading cause of death globally and one of the costliest chronic conditions in the U.S., with an estimated $49 billion spent annually.
The Foundation opposes tobacco company ownership of pharmaceutical or health care companies
Miami, FL, November 19, 2021 – Philip Morris International (PMI), which markets cigarettes internationally, recently purchased several respiratory health/pharmaceutical companies, including Vectura Group PLC. Vectura manufactures inhalers widely used by patients with COPD and other chronic lung conditions.
The COPD Foundation is unwavering in its opinion that a company that profits from the sale of products that cause COPD should not benefit from the sale of products that treat COPD. It stretches the boundaries of corporate morality.
The COPD Foundation is a patient-centered organization committed to preventing COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease and seeking cures while improving lives and advocating for all affected.
The Foundation’s Community Engagement Committee, Medical and Scientific Advisory Committee, board of directors, and the Foundation president, stand with the US COPD Coalition and other public health, medical, and patient advocacy organizations in opposition to the manufacture, advertising, and marketing of all addictive and harmful tobacco products.
According to the World Health Organization (WHO), tobacco kills over 8 million people each year. It accounts for 150,000 deaths per year in the United States and over 3 million deaths globally as the third leading cause of death worldwide.
The Foundation remains committed to its position against the use and marketing of addictive and harmful tobacco and nicotine products associated with the death of millions of people worldwide. As a result, we will not take financial support from any tobacco company.
Experts, Patients, and Celebrities Come Together for Nov. 4 Virtual Event to “Lace-Up” for Research, Education, Advocacy, and a Cure; Donor Match Continues through December 2021
Miami, FL, October 26, 2021 – Patient advocacy and research organization, the COPD Foundation, kicks off COPD awareness month with the celebrated annual Circle of Friends event, November 4 at 5 p.m. EDT. The event will be virtual and open to the global community.
Registration for the Circle of Friends is now open and is free for all participants.
This year’s Circle of Friends theme is "Lace-Up for Lungs," a popular social advocacy campaign (#LaceUpforLungs) in which participants lace-up and champion the need for better breathing and lung health, exercise and activity, and quality of life and caring for those impacted by chronic obstructive pulmonary disease (COPD), bronchiectasis, and nontuberculous mycobacteria (NTM) lung disease.
"The Circle of Friends and Lace up for Lungs provide an opportunity for the global community to come together and generate awareness and opportunity for all patients with chronic lung conditions," explained Ruth Tal-Singer, PhD, President of the COPD Foundation.
"Registrants at the Circle of Friends event will hear about the Foundation’s 360-degree partnership with our global community and our commitment to preventing COPD, bronchiectasis, and NTM lung disease while we improve lives and advocate for all affected."
Chapel Hill, NC and Miami, FL - Renovion and the COPD Foundation have announced the creation of a new partnership to accelerate the development of a novel therapy for the treatment of excessive airway mucus and inflammation in individuals with chronic obstructive pulmonary disease (COPD) and non-cystic fibrosis (CF) bronchiectasis. Phase 2 clinical trials are planned to begin in Q1 2022.
Renovion, a UNC Chapel Hill-supported biotechnology company, has developed ARINA-1, a novel nebulized therapy, to help patients who struggle with tenacious lung mucus and chronic inflammation that is associated with COPD, bronchiectasis, and other chronic lung diseases. In studies, ARINA-1 improves mucus transport 8x more effectively than standard of care therapies.
COPD and non-CF bronchiectasis are associated with a significant global burden. More than 320 million people have COPD, and it is the 3rd leading cause of death worldwide. Non-CF bronchiectasis is an orphan disease (under 200,000 cases in the US) with a global prevalence expected to grow by 10-20% in the next 10 years.
Together, Renovion and the COPD Foundation are leveraging the foundational research in bronchiectasis registries and COPD studies, such as those utilizing the SPIROMICS® and COPDGene® groups that demonstrate a need for therapies that target airway mucus plugging. The unique collaborative approach of the COPD Foundation’s global partnerships and COPD360Net allows for patient-centered drug development to accelerate clinical programs. The expertise of the COPD Foundation, combined with initial efficacy and safety data demonstrated by ARINA-1 in early trials, will allow the Renovion clinical program to progress with maximum efficiency.
A company that profits from the sale of tobacco products that cause COPD should not profit from the sale of products that treat COPD
Washington, D.C., July 29, 2021 – Philip Morris International, which markets cigarettes internationally, is purchasing the pharmaceutical company Vectura Group PLC, which develops and manufactures inhalers widely used by patients with Chronic Obstructive Pulmonary Disease (COPD). The COPD Foundation condemns this acquisition. A company that profits from the sale of products that cause COPD should not benefit from the sale of products that treat COPD. It stretches the boundaries of corporate morality.
"We are concerned that this alliance may lead to unintended consequences that harm patients. Patients, Providers, Payers, and Pharmacies will likely face the ethical dilemma as to whether it is appropriate to use treatments that profit Big Tobacco," stated Dr. Byron Thomashow, COPD Foundation’s Chief Medical Officer. In addition, research with links to the tobacco industry is generally not funded by public organizations. Life-saving research may not be possible if it includes inhaled devices manufactured by Vectura.
The position of Phillip Morris that those who oppose the alliance of Big Tobacco and Pharma are promoting the continuing sale of tobacco products is preposterous. Phillip Morris can cease the distribution of tobacco products without the incentive to profit from the diseases that it causes.
"The COPD Foundation joins growing concern from the United Kingdom government and other associations/organizations including the American Lung Association and American Thoracic Society calling for the prevention of the Phillip Morris-Vectura acquisition by stockholder opposition and action of the United Kingdom government," stated Dr. Ruth Tal-Singer, President and Chief Scientific Officer of the COPD Foundation.
New partnership set to accelerate innovative AI-powered deep Real World Evidence research into finding the missing millions with Chronic Obstructive Pulmonary Disease (COPD) and address unmet needs.
NY, New York, 12 July 2021. - Savana, world leader in deep Real World Evidence (deep RWE) clinical research, and US not-for-profit organization The COPD Foundation announced today that they are partnering to accelerate innovative clinical research into COPD.
The partnership will unlock the clinical data from de-identified, free text in Electronic Health Records (EHRs) to establish a predictive model to identify patients who may have COPD but have not yet been diagnosed. The research aims to find individuals with "pre-COPD" based on known risk factors, and identify commonly used medications that may be associated with improved outcomes for individuals with COPD or those at risk for developing COPD.
The US COPD challenge
Over 16 million people in the United States have COPD1, and up to 60% of COPD cases go undiagnosed.2 According to the World Health Organization, COPD is the third leading cause of death globally and a significant driver of global healthcare costs.3 COPD and symptomatic pre-COPD continue to be a leading cause of disabling symptoms and suffering.
The COPD Foundation was established to improve the lives of people with COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease through initiatives that expand services and speed innovations which will make treatment more effective and affordable. The COPD Foundation does this through scientific research, education, advocacy and awareness with the goal of disease prevention, slowed progression, and ultimately a cure.