Foundation for Sarcoidosis Research Staff Members
Chief Executive Officer
Mary joined the Foundation for Sarcoidosis Research as the organization’s first-ever Chief Executive Officer in 2020. As CEO, Mary serves as the primary representative and spokesperson for FSR and leads the organization’s strategic vision with patient engagement, strategic partnerships, fundraising, advocacy efforts, program direction, and an aggressive communications and research agenda.
Mary brings 35 years of nonprofit leadership and management experience to the role. Prior to joining FSR, she served as Executive Director at The Myositis Association (TMA.) As Executive Director of TMA, McGowan was featured and highlighted as a preeminent rare disease leader by numerous entities including American Autoimmune Related Diseases Association, Global Genes and the National Organization for Rare Diseases for her innovative national campaigns including Women of Color and Myositis and her leading telemedicine initiatives for autoimmune patients during COVID-19.
Prior to her time at TMA, Mary served as CEO of WomenHeart: The National Coalition for Women with Heart Disease. During her 8 years with WomenHeart, McGowan ensured the organization’s long-term growth and sustainability as the leading voice for the 48 million American women living with or at risk of heart disease. McGowan also served as Executive Director of the Allergy & Asthma Network, the leading nonprofit organization dedicated to eliminating suffering and death due to asthma, allergies and related conditions. She held various positions with the American Academy of Pediatrics during her service of 18 years. McGowan earned a Master’s Degree in Human Resources Development from the George Washington University and a B.A. from Trinity University.
Vice President of Research and Strategic Partnerships
Tricha Shivas joined the Foundation for Sarcoidosis Research (FSR) in December of 2020. As the Vice President of Research and Strategic Partnerships she works with various stakeholders including individuals living with sarcoidosis and their loved ones, academic researchers, clinicians, industry partners, regulators and policy-makers to advance FSR’s mission to accelerate sarcoidosis research in the search for treatments and a possible cure.
In her previous roles, she drove strategic plan development and growth of advocacy, fundraising, outreach, and research programming. She is a collaborative and strategic leader with over 15 years of non-profit results-driven experience. She is passionate about creating diverse, high performance teams that generate impactful outcomes.
In her most recent role as Development Director at The Myositis Association, Tricha expanded the organization’s national and international reach through the development of creative programming, marketing, and partnership stewardship and growth. She developed strategic goals emphasizing the improvement of health outcomes, doctor patient communication, and access to treatment for all people living with autoimmune and rare diseases. She collaborated with researchers, clinicians, regulators, and industry partners to identify best practices in clinical care and to advance evidence-based research and drug development.
Tricha received her bachelors in American Studies from Albright College and her Masters of Bioethics from University of Pennsylvania. She currently serves on Drexel Hill University’s Health Administration Department Advisory Council. She lives in Virginia with her husband, Daryl, and her dog, Dooley.
Director of Development
Angela Frelander joined the Foundation for Sarcoidosis Research in 2017. As the Director of Development, she oversees all fundraising activities at FSR. This includes building relationships with individual donors, foundations, corporations, and special event management. Angela works closely with the executive director and the board of directors to implement strategic growth initiatives to continue to help build an organization that improves the lives of those who suffer from sarcoidosis.
Angela has extensive experience in developing and fostering client relationships and business marketing. She is passionate about improving the client experience as well as providing superior service. She holds a Bachelor’s degree in Psychology and a minor in Spanish from North Central College in Naperville, Illinois. Angela was the recipient of North Central College’s Presidential Scholarship and was inducted into Psi Chi- the International Honor Society in Psychology.
Patient Engagement Manager
Mindy joined the Foundation for Sarcoidosis Research in 2019. As Patient Engagement Manager, she works to increase FSR’s engagement with individuals living with sarcoidosis and their loved ones through our education and advocacy programming. Mindy also works to improve FSR’s research engagement strategies and educational programming surrounding the FSR Patient Registry.
Mindy has over 12 years of experience providing strategic program development, management and leadership across uniquely challenging settings. Most recently, Mindy’s focus was patient and survivor advocacy in the adolescent and young adult (AYA) cancer space, where she drove peer-to-peer support, educational, and psychosocial programming for people diagnosed between the ages of 15 and 39. With experience that includes working in both academic medical center and non-profit settings, she brings an in depth understanding of how research informs and elevates supportive and advocacy programming. Mindy studied public relations and communications at University of Oregon, and public health education at Portland State University. She also holds a post-graduate-certificate in biomedical ethics.
Tamara Al-Hakim joined the Foundation for Sarcoidosis Research in November 2018. As Research Project Coordinator, she works alongside the Research Manager to implement the clinical research initiatives for the Foundation for Sarcoidosis Clinical Studies Network. She also manages the FSR’s Small Grant Program, which helps jumpstart early research into the sarcoidosis space, and utilizes her medical knowledge to create patient-friendly content about clinical research in sarcoidosis.
Tamara graduated from an international medical school, and has worked as a clinical research assistant for industry-sponsored clinical trials at Apex Medical Research. She also teaches medical doctors clinical skills and proper patient note documentation. She is currently working toward receiving her master’s degree in Health Administration and Public Health from UIC. Tamara is excited to bring her medical knowledge and clinical experience to the FSR and promote sarcoidosis research.
Lesley began volunteering at FSR in 2012 after her husband was diagnosed with cardiac sarcoidosis. She has experienced first-hand the devastation that sarcoidosis can cause, and became determined to help the fight in eradicating this disease. Lesley quickly became involved in all aspects of the foundation, and subsequently joined on as Outreach Coordinator in 2015. Lesley can be credited with her work in developing the foundation’s extensive Physician and Investigator Directory and Network. This network serves as an invaluable resource for sarcoidosis outreach and communication, in hopes that it will connect sarcoidosis specialists from around the world to advance research and awareness.
Lesley is an accomplished project manager with experience in both public and private education environments. She holds a BA in Psychology from Trinity College in Hartford, Connecticut, as well as an MA in Education. Lesley lives on the north shore of Chicago with her husband and two sons.
Administrative and Research Project Coordinator
Hana Nabulsi joined the Foundation for Sarcoidosis Research in August 2016. As an Administrative and Research Project Coordinator she works alongside the Director of Research Programs to lead patient outreach, engagement, and recruitment for research studies. She also manages efforts to analyze and report study data. Her other duties include patient resourcing, patient advocacy research, project planning, and meetings management.
In 2019, Hana graduated with a degree in Neuropsychology from DePaul University and hopes to earn her master’s degree. She is interested in pursuing a career that deals with patient empowerment and healthcare.
Development and Finance Project Coordinator
Nicholas Zeppos joined the Foundation for Sarcoidosis Research in August 2017. He is currently at DePaul University studying marketing. As an Administrative Assistant, Nick plays a large role in office operations, as well as researching strategic new ways to engage physicians, patients, and potential investors. He also assists with outreach efforts to engage patients and supporters in FSR’s mission and increase community awareness on the disease.
Upon graduating, Nick hopes to use his marketing degree to help advocate for small non-profit businesses in the healthcare community.