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.
To view Mary’s reflections from her first year as CEO, read her blog here.
Chief Strategy Officer
Tricha Shivas joined the Foundation for Sarcoidosis Research (FSR) in December of 2020. As the Chief Strategy Officer, 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 support patients and accelerate sarcoidosis research in the search for a cure.
Tricha is a collaborative and strategic leader with over 15 years of non-profit results-driven experience. Tricha has dedicated her career to improving the lives of those with complex chronic illness and rare diseases. Tricha has served patients in her roles with the Washington Regional Transplant Community, The Muscular Dystrophy Association (MDA), The National Quality Forum (NQF), WomenHeart – the National Coalition for Women with Heart Disease, and The Myositis Association (TMA). In these roles, she helped build comprehensive patient engagement and awareness programming, developed robust diversity, inclusion, and equity programming, worked with the NIH, FDA, and industry to expand therapeutic pipelines and to increase patient centricity in drug develop, and worked with the CDC, HHS, regulators, and state and federal legislators to improve national health policy strategies, patient access to care, and healthcare quality measures.
Tricha received her bachelors in American Studies from Albright College and her Masters of Bioethics from University of Pennsylvania. She currently serves on Drexel University’s Health Administration Department Advisory Council and Global Skin’s Rare Disease Steering Committee. Tricha lives in Ohio with her husband, Daryl, and her dog, Dooley.
Global Head of Clinical Engagement
Diane is a seasoned professional with more than 30 years of success in business development, marketing communications and creating strategic partnership alliances. Most recently, she worked at Mary’s Meals USA in marketing and communications where she launched the organization’s social media platforms and established content partnerships with national and international media, including CNN and CNN Heroes. Diane’s leadership roles include VP, Patient Care at Health Media Network where she developed and implemented strategy for digital communications platforms for hospital networks, clinics and physicians’ offices. Prior to that, she served as VP Strategic Alliances at WomenHeart: The National Coalition for Women Living with Heart Disease, where she launched the National Hospital Alliance by partnering with hospital administrators, clinicians and physicians to develop content and programs to benefit Alliance membership and support patients and WomenHeart Champions. Diane also has extensive marketing experience with Billboard Magazine, The Hollywood Reporter, Reed Business Information, Advertising Age, and Procter & Gamble.
Diane graduated from Boston College Carroll School of Management with a BS in Marketing, Magna Cum Laude in the Honors Program. After 9/11, Diane was an inaugural member of the CERT Team developed in New Canaan, CT and was later tapped for management training at Homeland Security in Wethersfield, CT where she is currently a volunteer and team leader. Diane trained her first golden retriever Fenway for therapy work and certified him through TDI (Therapy Dogs International). They participated in the Sandy Hook officer ceremony at the Fire Station and met with families at the town community center in December of 2012. They also received the 5-year Community Service citation from Waveny Care Center’s Alzheimer’s Village and Long-term Care facility for their weekly visits. Fenway earned the TDI AKC special distinction for over 50 hours of therapy service.
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.
Director of Patient Programs
Mindy joined the Foundation for Sarcoidosis Research in 2019. As Director of Patient Programs, 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 14 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.
Senior Communications and Marketing Manager
Cathi Davis joined the Foundation for Sarcoidosis Research team in April 2021, inspired by a friend affected by sarcoidosis. As Senior Communications and Marketing Manager, she manages the strategy for all external communications, website, and public relations messages and collateral to consistently articulate FSR’s mission.
Cathi graduated from Roosevelt University in Chicago, IL with a bachelor’s degree in Integrated Marketing Communications. Prior to FSR, she spent her professional career creating content and marketing campaigns for several non-profits, mainly focused on efforts that support people with disabilities. Working in the nonprofit industry, she has learned how to build effective communication strategies to reach a variety of audiences. She hopes to continue using her skills to increase awareness for sarcoidosis research to help accelerate treatments and possibly a cure.
Senior Research Manager
Rebecca joined the Foundation for Sarcoidosis Research in August 2022 as a Public Health Consultant, later being promoted to Senior Research Manager. She will be aggregating and analyzing insurance claims using Komodo to support public health research and community projects under the Chan Zuckerberg’s Initiative “Rare As One” grant.
Rebecca recently graduated with a Master’s degree in Public Health with a concentration in Epidemiology and Biostatistics from Tufts University School of Medicine. While in graduate school, she was drawn to the rare disease world because of the combination of strength and kindness she encountered from the community. For her capstone project, she created a dataset of the demographics of the studied populations across three rare diseases and compared that to the demographics of what we currently understand about the global underlying population.
Her previous work was in women’s safety and empowerment. She co-founded and directed communications for a women’s safety program called Train Your Roar. In addition to punching, she enjoys distance running. She is raising her four teenagers at mile 24 of the Boston Marathon.
Clinical Engagement Manager
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, later being promoted to Clinical Engagement Manager. 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.
Senior Research Coordinator
Chase joined the Foundation for Sarcoidosis Research in May 2021. As Senior Research Coordinator, he plays a role in the development and preparation of studies, design and implementation of study awareness campaigns and recruitment materials. He also assists with the dissemination of patient education materials and investigator/community outreach as well as tracking and maintaining research-related accounting.
Chase holds a BA in Psychology from the University of Iowa. Prior to FSR, Chase worked in the Health, Brain and Cognition Lab at the University of Iowa examining the effects of exercise on the aging brain. He also worked at Wheaton College researching leadership humility within Non-profit organizations.
Development and Administrative Coordinator
Nick joined the Foundation for Sarcoidosis Research in May 2022. As Development and Administrative Coordinator, he supports the FSR’s fundraising efforts to make progress towards their mission. He also provides support to donors, ensuring that their connection to FSR is meaningful for them.
Nick graduated from Columbia College Chicago with a degree in Comedy Writing and Performance. Since graduating, he has worked at several non-profits including Northwestern Memorial Foundation and Rotary International, where he enjoyed supporting their various fundraising campaigns. He is excited to use his fundraising experience to support sarcoidosis research and awareness efforts.
Patient Outreach Coordinator
Genevieve joined the Foundation for Sarcoidosis Research in December 2022. As Patient Outreach Coordinator, she will be supporting FSR’s engagement with people living with Sarcoidosis and their loved ones. She is excited to contribute to FSR’s education and advocacy efforts. Genevieve graduated from the University of North Carolina at Charlotte with a Bachelor’s of Science in Public Health with a minor in Outdoor Leadership. Prior to joining FSR, Genevieve worked in a clinical setting providing direct care for young people with disabilities. She has also worked in the world of leadership development and outdoor education. She has always enjoyed coordinating meaningful experiences that connect communities, promote health, and empower patients.
Diversity & Inclusion Programs Consultant
As Diversity & Inclusion Programs Consultant, Khaleelah manages efforts to improve diversity and inclusion for patients and physicians and other stakeholders by managing programs such as the Women of Color Committee. Khaleelah has over six years of research and collegiate teaching experience; and a professional background in non-profit program development and volunteer services spanning over 12 years. In her previous roles, she oversaw the enhancement and execution of numerous program initiatives and national training conferences. As Director of Programs at WomenHeart: The National Coalition for Women with Heart Disease, she managed community-based education initiatives, peer support programs, social media campaigns and led the planning and execution of the organization’s annual conferences for patients and national hospital partners. In 2017, Khaleelah launched her consulting business and has worked for clients such as WomenHeart and The Myositis Association, managing and directing various aspects of patient volunteer programs, training, and volunteer services. She continues her work in the non-profit sector, serving community members through her position as Community Benefit Specialist with MedStar Georgetown University Hospital and continues to offer consulting services for non-profit organizations. Khaleelah received her MA in Sociology from the University of Maryland, College Park, and B.A. from the University of California, Riverside where she graduated Magna Cum Laude, Phi Beta Kappa. She currently serves on the Board of Directors for Open My Heart Foundation and The Talking Drum, Incorporated. Khaleelah is a California native and resides in the District of Columbia with her husband and three kids.