Latest news with #MaryMcGowan
Yahoo
5 days ago
- Health
- Yahoo
Foundation for Sarcoidosis Research Announces 2025 Global Virtual Sarcoidosis Summit – United for Progress: A New Chapter in Sarcoidosis
CHICAGO, June 04, 2025 (GLOBE NEWSWIRE) -- The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving patient support, is proud to announce the 2025 FSR Global Virtual Sarcoidosis Summit, taking place Saturday, June 28, through Sunday, June 29, 2025. This year's theme, "United for Progress: A New Chapter in Sarcoidosis," emphasizes connection, education, and empowerment for individuals impacted by sarcoidosis around the world. Now in its fourth year, the FSR Global Virtual Sarcoidosis Summit is the world's largest online sarcoidosis event, bringing together patients, caregivers, clinicians, and researchers for two days of expert-led sessions, interactive discussion forums, and community-building opportunities. The summit offers critical tools and knowledge to help attendees take control of their health, better understand the disease, and find a global support network. 'The 2025 Summit is more than just an event — it's a powerful opportunity to unite the global sarcoidosis community around shared learning, personal empowerment, and collective progress,' said Mary McGowan, FSR President and CEO. 'With sessions designed for patients, caregivers, and clinicians alike, the summit aims to break down barriers to care and ensure that no one has to face sarcoidosis alone.' Attendees will explore over 20 live and on-demand sessions led by world-renowned sarcoidosis experts, covering critical and rarely discussed topics including: Sarcoidosis 101: From Diagnosis to Management Environmental Triggers in Sarcoidosis Genetics and Familial Connections Intimacy and Sarcoidosis Fatigue, Brain Fog, and Invisible Symptoms What's Sarcoidosis and What's Not? Understanding Organ Involvement, Monitoring, and Shared Decisions Ask the Sarcoidosis Experts Rare Manifestations of Sarcoidosis Nutrition, Lifestyle, and Mental Health Strategies Navigating Insurance and Access to Care FSR is honored to welcome actress and sarcoidosis advocate, Jeryl Prescott Gallien, as the 2025 Summit keynote speaker. Best known for roles in Star Wars, The Walking Dead, Swamp Thing, and All the Queen's Men, Jeryl brings a powerful voice as someone living with cardiac sarcoidosis. Through her advocacy, including work with FSR's 'Ignore No More' campaign, she has helped raise national awareness about the disease and its disproportionate impact on Black women. Her keynote will offer inspiration, insight, and a deeply personal perspective on the power of community in the face of chronic illness. Interactive community forums, video chats, and a virtual exhibit hall featuring more than 20 educational booths will allow participants to connect, ask questions, and access trusted resources. FSR's Global Sarcoidosis Clinic Alliance members will also be present to offer local and specialized care insights. Registration will close on June 14, 2025. Scholarships are available for those in need of financial assistance. All registrants will receive 30-day access to summit session recordings and resources to view post-event. To register, apply for a scholarship, or learn more, visit: Sarcoidosis Sarcoidosis is a rare inflammatory disease that causes the immune system to form granulomas—clusters of inflammatory cells—in one or more organs. Symptoms can vary widely and may include fatigue, shortness of breath, chronic pain, and neurological issues. Sarcoidosis is difficult to diagnose and currently has no known cure. About the Foundation for Sarcoidosis Research (FSR) The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving patient care through research, education, and support. Since its founding in 2000, FSR has invested over $8 million in sarcoidosis-specific research and built a global community of support. Learn more at Media Contact: Cathi Davis Director of Communications and Marketing 312-341-0500 cathi@ A photo accompanying this announcement is available at
Yahoo
19-05-2025
- Health
- Yahoo
The Coalition to Transform Clinical Trial Engagement Launches National 'Champions for Change – PTO Initiative' to Expand Access to Clinical Trials for Working Patients with 7 Corporate and Non-Profit Members
CHICAGO, May 19, 2025 (GLOBE NEWSWIRE) -- In recognition of Clinical Trials Day, the Coalition to Transform Clinical Trial Engagement (CTCTE) proudly announces the launch of the Champions for Change – Paid Time Off (PTO) Initiative, a national effort to reduce job-related barriers to clinical trial participation by partnering with employers to provide paid time off (PTO) for employees enrolling in trials. Launched in 2024 and led by the Foundation for Sarcoidosis Research (FSR), CTCTE is now a 36-member collaborative of patients, clinicians, medical societies, patient advocacy organizations, and industry, committed to increasing engagement in clinical trials by reducing key barriers reported by patients with chronic conditions. The Champions for Change – PTO Initiative emerged from this coalition as part of its national strategic plan to address workplace-related obstacles. This initiative builds off FSR's and the CTCTE's efforts which resulted in a requested letter from the Department of Labor (DOL) providing clarity that employees who enroll in clinical trials and family caregivers supporting those enrolled in clinical trials, are protected under the Family Medical Leave Act (FMLA). By working with Human Resources departments, FSR and the CTCTE are encouraging companies across America to provide at least one paid day off for clinical trial participation as a benefit for their employees. 'By giving employees paid time off to participate in clinical trials, companies have the power to promote clinical trial access and participation for employees, accelerate medical breakthroughs, and save lives for current and future generations. This is more than a benefit---it's a bold and necessary commitment to humanity and a powerful way for corporate America to lead with united purpose,' said Mary McGowan, President and CEO of the Foundation for Sarcoidosis Research. 'We know that getting clarity of FMLA protections for clinical trial participants and their support system, is an important step to making clinical trial participation an option for all patients who wish to participate. This initiative allows us to expand that conversation from the doctor's office to corporate America.' Clinical trials drive medical innovation and often offer patients access to better treatment options. Yet those who could benefit most are frequently left out due to systemic barriers that make participation too costly. According to FSR's IRB-approved survey of Black patients with sarcoidosis, limited paid time off, inflexible work schedules, and income loss from missed work were cited as barriers to joining or completing a clinical trial. Other regional and national studies have come to the same conclusion about job-related barriers contributing to lower enrollment and retention – especially among underserved communities. These burdens lead to exclusion from trials, which not only harms the communities most impacted by chronic conditions but also jeopardizes the clinical trials enterprise by failing to include patients from all backgrounds—limiting what we learn about potential treatments.1 2 ________________________________ 1 National Academies of Sciences, Engineering, and Medicine. (2022). Improving representation in clinical trials and research: Building research equity for women and underrepresented groups. The National Academies Press.2 Craig, L. S., Sarpong, D. F., Peacock, E. M., & Theall, K. P. (2023). Clinical trial participation among underserved communities: Insights from the Louisiana Community Engagement Alliance. The American Journal of the Medical Sciences, 366(6), 324–332. 'As the President and CEO of a mid-size health-focused non-profit, I am acutely aware that the health of my employees is essential to the success of our organization. By providing my employees with time off for clinical trial participation, I not only signal to my employees that I care about them and their health and wellbeing, but it also starts the conversation at the workplace about the power of clinical trial participation to advance the development of better therapies and outcomes for all impacted by chronic diseases,' said McGowan. The initiative was first introduced in May of 2023 by FSR at a Congressional Briefing in response to barriers identified in FSR's 60-page white paper as part of a comprehensive roadmap to expand engagement of underrepresented communities in clinical trials. Last year, on clinical trials day, Mallinckrodt Pharmaceuticals became the first company to officially sign on to 'Champions for Change', leading the way for other companies to do the same. Today, the initiative goes public with seven national partners committed to championing change for clinical trials in the workplace. We're proud to recognize the founding members of the : American Thoracic Society, Diverse Research Now, Foundation for Sarcoidosis Research, Mallinckrodt Pharmaceuticals, Mural Health, Recursion, and Sabai Global. Each of these employers has committed to providing at least one day of paid time off for employees participating in clinical trials— demonstrating their leadership in expanding access and driving innovation in medical more information about the Champions for Change – PTO Initiative and how to join the Coalition to Transform Clinical Trial Engagement, visit The work of CTCTE is sponsored by Mallinckrodt Pharmaceuticals and supported by a Scientific Advancement Grant from Boehringer Ingelheim. About the Foundation for Sarcoidosis Research (FSR): The Foundation for Sarcoidosis Research is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $7.2 million in sarcoidosis-specific research efforts. Media Contact:Cathi DavisEmail: cathi@ 312-341-0500 A photo accompanying this announcement is available at
Medscape
07-05-2025
- Health
- Medscape
Slow Burn: Wildfires Have Lasting Effects on Lung Health
'Wildfire smoke is not a fleeting inconvenience. It is a lasting, insidious threat,' said Mary McGowan, CEO of the Foundation for Sarcoidosis Research (FSR), Chicago, in a statement. As the effects of wildfires persist in several parts of the United States, McGowan highlighted a public health alert published online earlier this year in which the FSR, a nonprofit organization, outlined immediate action needed to help prevent future adverse health outcomes in the wake of wildfires. 'As the smoke settles, it brings with it a long tail of health consequences, including the risk of chronic inflammatory diseases such as sarcoidosis,' McGowan said in the statement. 'Exposure to environmental toxins — especially inhaled fine particulate matter like that found in wildfire smoke — is widely recognized as a contributing factor to this disease,' she said. A spike in sarcoidosis diagnoses occurred among firefighters and rescue workers exposed to dust and smoke at Ground Zero after the 9/11 disaster in New York; however, public perception of the sarcoidosis risks associated with smoke exposure remains limited, she added. Policy Priorities 'Public messaging tends to focus on the immediate: Evacuations, air quality alerts, temporary masks and, in many cases, for good reasons. But for those living near the fire zone — or working within it — the health risks certainly don't vanish when the skies clear; they accumulate,' McGowan said in her statement. 'Firefighters, cleanup crews, and nearby residents continue to breathe in particles that may settle deep in the lungs and trigger inflammation that doesn't show up on a scan until years later,' she said. No widespread campaign currently exists to help people understand the long-term health consequences of wildfire smoke, and there is no comprehensive medical guidance for what recovery and monitoring should look like in the months and years following high exposure, McGowan said in her statement. The science continues to support the case for concern, but public health has not kept up, she added. 'To protect lung health during wildfires, policy initiatives should focus on improving air quality monitoring, including measurement of the risk of breathing in small particular matter,' McGowan said in an interview. Other protective measures include providing access to respiratory protection both during and after fires and promoting public education and awareness about the risk of small particulate matter not only in smoke but also in the ashes that need to be cleaned up after a fire, she said. Points for Physicians and Patients For those living in areas of exposure to wildfires and/or their cleanup, McGowan emphasized precautions including monitoring air quality and avoiding outdoor activities when air quality is poor if possible. Other precautions include wearing a N95 or P100 respirator when outdoors, as these products are designed to filter fine particles effectively. Staying hydrated, continuing with prescribed medications such as oxygen therapy and inhaler use, and sealing indoor spaces add a level of protection as well, McGowan told Medscape Medical News . Finally, those exposed to wildfire smoke should be attentive to their health and seek medical attention for symptoms such as difficulty breathing, chest pain, persistent cough or sneezing, eye irritation, or dizziness or confusion, she said. Diagnostic Clues and Treatment Strategies A study previously reported by Medscape Medical News showed an association between climate and respiratory health. McGowan also cited a study showing an association between air pollution and lung function in sarcoidosis in particular. Individuals who develop sarcoidosis after wildfire exposure may present with nonspecific symptoms that resemble asthma or bronchitis, which is a common barrier to the early identification of sarcoidosis, said Rohit Gupta, MD, director of the Sarcoidosis Program at Temple University Hospital, Philadelphia, in an interview. The patient's symptoms could be caused by exposure to environmental factors, but a more thorough workout is needed if the patient has persistent disease or imaging findings, Gupta said. 'Some patients also might need to be their own advocate to see if they need imaging or a referral to a specialist in this field,' Gupta noted. Insurance and other socioeconomic factors can also present as barriers to early identification of sarcoidosis, he said. Monitoring symptoms of individuals exposed to wildfire smoke is essential, Gupta told Medscape Medical News . 'If a patient's symptoms resolve, then we know it was the environmental exposure causing those symptoms. If symptoms persist, then physicians have to be aggressive about ordering further imaging or biopsy to get the correct diagnosis,' he said. For those in areas with wildfire smoke who are not first responders, prevention of exposure by staying indoors, wearing masks, and monitoring the local air quality is the best way to reduce the risk, said Gupta. As for additional research, prospective studies by a larger entity such as the National Heart, Lung, and Blood Institute; American Thoracic Society; or American Lung Association to explore an association between air pollution and respiratory illness and whether decreased exposures reduce the disease burden, Gupta told Medscape Medical News . 'In the long term, hopefully we can prevent wildfires, address climate change and take action on those bigger policies,' he said.
Associated Press
02-04-2025
- Health
- Associated Press
Foundation for Sarcoidosis Research Joins with Walgreens, Cedars-Sinai to Provide Foothill Unity with Free N95 Masks to Protect Residence Cleaning Up from the Recent Los Angeles Wildfires
CHICAGO, April 02, 2025 (GLOBE NEWSWIRE) -- As clean up continues from January's devastating Los Angeles wildfires, the Foundation for Sarcoidosis Research (FSR) is joining with Walgreens, Cedars-Sinai, and Foothill Unity to provide community members with free N95 masks to protect their lungs now and in the future. This collaboration aims to reduce long-term health risks, including pulmonary, cardiac, and ocular sarcoidosis posed by exposure to wildfire smoke, fine particulate matter in the air, and toxic chemical exposures. Even during the clean-up phase, individuals need to take every precaution whenever they are around or working in soot, ash, or dust that is left behind by the fires. Drawing from the documented rise in sarcoidosis cases amongst 9/11 first responders, especially those involved in the clean-up, experts believe that post-fire clean-up exposure to small particulate matter, which can not only exacerbate current lung conditions but may also expose individuals to risk factors that could lead to chronic lung conditions, like sarcoidosis, in the future. 'Prolonged exposure to smoke and particulate matter can have long-term health implications, including an increased risk of developing sarcoidosis,' said Mary McGowan, CEO of FSR. 'We are incredibly grateful to Walgreens and Cedars-Sinai for their support and generous contributions, which will help our efforts to protect the health of wildfire-affected residents. We would also like to express our gratitude to Foothill Unity for distributing these masks for free as we work together to protect the community's lung health.' Walgreens and Cedars-Sinai, a founding member of the FSR Global Sarcoidosis Clinic Alliance, have each donated 1,000 N95 masks for distribution to residents at risk of smoke and small particulate matter exposure. 'Walgreens is proud to have donated 1,000 masks to FSR and to work with FSR to secure a community partner for mask distribution to those impacted by the fires to ensure their ongoing safety to prevent future lung health concerns,' said Donovan Tran, Walgreens Healthcare Supervisor, Pharmacy and Retail Operations FSR is partnering with Foothill Unity to make these N96 masks available to the public at no cost. Those seeking masks can pick up the masks at the following locations. Foothill Unity 790 W. Chestnut Avenue Monrovia, CA 91016 (626) 358- 3486 Masks Available: Monday and Friday 9:00 - 11:30 AM Foothill Unity 191 N. Oak Avenue Pasadena, CA 91107 (626) 358-3486 Masks Available: Thursday and Friday 9:00 - 11:30 AM FSR is committed to raising awareness about the risks of smoke exposure and small particulate matter promoting preventive measures to protect public health. Residents are encouraged to monitor local air quality, limit outdoor activities during peak smoke periods, and wear protective masks when necessary. FSR will continue its collaboration with local health organizations and community partners to ensure residents have the resources and knowledge needed to mitigate health risks from the ongoing wildfires. For more information about the Foundation for Sarcoidosis Research, please visit FSR and affiliated clinicians are available for interview upon request. About Sarcoidosis Sarcoidosis is a rare inflammatory disease characterized by granulomas—tiny clumps of inflammatory cells—that can form in one or more organs. 90% of patients living with sarcoidosis have lung involvement. Despite advances in research, sarcoidosis remains challenging to diagnose, with limited treatment options and no known cure. Approximately 175,000 people live with sarcoidosis in the United States. About the Foundation for Sarcoidosis Research The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for those living with the disease through research, education, and support. For more information about FSR and its community programs, visit: Media Contact: Cathi Davis 312-341-0500
