AUTOIMMUNE - Key Persons
Job Titles:
- Program and Design Manager
Amanda plays an integral role in developing and managing strategic projects across the team. Amanda has a strong background in nonprofits and social work. In her spare time, you can find her spending time outdoors with her husband and two dogs.
Amanda advocates for Autoimmune patient's public policy priorities on Capitol Hill and with government agencies. She has a strong foundation in coalition management and stakeholder engagement. Amanda holds a Master of Public Health in Health Policy from The George Washington University and a Bachelor of Science in Human Nutrition, Foods, and Exercise from Virginia Tech. In her free time, Amanda loves taking her dog on hikes, home improvement projects, and following the Buffalo Bills.
Amanda manages the daily activities of the Association's development program. Amanda has a background in campaign management and is passionate about serving the community. In her spare time, Amanda loves to hike mountains and explore the outdoors.
Job Titles:
- Strategic Alliance Director
Amy has an extensive background in nonprofit management, event management, marketing, business development, and government relations. She is an alumna of the University of South Florida, where she earned her degree in Business Administration and Marketing and joined the co-ed business fraternity Alpha Kappa Psi. Throughout her professional journey, Amy has dedicated her time to volunteering and serving on boards for various nonprofit organizations, including the PACE Center for Girls, and has taken the lead in organizing numerous philanthropic events. Beyond her professional pursuits, Amy enjoys spending quality time with her partner, James, and their Yorkie, Chanel. Her hobbies include being on the water, singing at local venues, experimenting with new recipes, and exploring new destinations through travel.
Job Titles:
- Secretary
- Head of Strategy and Development
Anna is a nationally recognized patient advocate regularly consulting with healthcare start-ups, pharmaceutical companies, and other organizations to incorporate patient values into healthcare design, technology, and policy reform.
Shortly after being diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) at age 11, her mother was told by the family's health insurance plan that coverage for her treatment was denied because arthritis "was not on their list of approved childhood conditions." From this point on, Anna's childhood was marked by similar barriers to effective treatments - the consequences of which ultimately shaped her access to educational and professional opportunities into adulthood.
Today, Anna works as the head of strategy and development for a health economics and policy research center driving a research agenda that elevates patient engagement in value assessment in healthcare - working to ensure that the barriers to treatments that she's experienced are addressed on a system level. Anna serves as co-chair of the Tufts Medical Center Patient and Family Advisory Council (PFAC) and is on the patient advisory board of Clara Health. She previously served on the Massachusetts Leadership Board of the Arthritis Foundation and also serves on the Foundation's National Advocacy Committee.
Anna holds a B.A. in Hospitality Administration from the University of Massachusetts at Amherst.
Job Titles:
- Database & Patient Support Manager
Aricka manages the organization's database, information/donation processing and provides support, resources, and other educational materials to Autoimmune Association constituents. Aricka has a passion for supporting and encouraging others who are suffering from mental or physical illness. She is certified as a transformational life coach and mindfulness and meditation coach, with an interest in studying holistic health and wellness. Aricka loves to travel, see new places, and connect with people from all walks of life.
Job Titles:
- Vice President, Accounting & HR
Cathy has been with Autoimmune Association since 2007. She has been in the accounting field her entire career and loves working at such an incredible nonprofit organization. In her spare time, she enjoys being with her 2 cats and guinea pigs and plays in a cornhole league.
Job Titles:
- Marketing & Communications Director
Colleen has an extensive background in the development and execution of marketing and communications strategy for nonprofits, government, Fortune 500 companies and small businesses. She is passionate about raising awareness for health conditions and has worked with and volunteered with the American Society for Nutrition, the American Academy of Otolaryngology, and the Pancreatic Cancer Action Network. Colleen holds a bachelor's degree in Public Administration from Michigan State University and a master's degree in Public and Political Communication from Wayne State University. In her free time, Colleen enjoys reading, being outdoors, playing with her puppy, and traveling.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Professor of Pathology and Laboratory Medicine at the Perelman School of Medicine of the University of Pennsylvania
Dr. Luning Prak is a Professor of Pathology and Laboratory Medicine at the Perelman School of Medicine of the University of Pennsylvania. She directs a research lab that studies human B cell immunobiology, with a special focus on antibody repertoires in autoimmunity. Additionally, she directs the Human Immunology Core at the Perelman School of Medicine and is the Associate Director of the Clinical Immunology Laboratory at the Hospital of the University of Pennsylvania. She earned a bachelor's degree in Molecular Biology from Princeton University and a PhD in Immunology and a doctorate in Medicine from the University of Pennsylvania.
Job Titles:
- Member of the Board of Directors
In 2008, Indie Lee was diagnosed with a life-threatening brain tumor that doctors felt could be environmentally derived and attributed to something as simple as what she was putting on her skin. This was her awakening. After surviving a successful surgery, she embarked upon a new journey, Indie Lee skincare - a clean beauty line dedicated to educating and empowering others to live their healthiest life.
Job Titles:
- Professor of Pathology / Brigham and Women 's Hospital
Laura oversees organizational operations and strategic initiatives in mission, impact, and stakeholder relations. As an autoimmune patient, Laura is passionate about improving healthcare, empowering patients, and driving innovation in the autoimmune community. She holds a Bachelor of Science in Economics from Brigham Young University and a Master of Business from Western Governors University. On the weekends, Laura enjoys hosting gatherings, traveling, and exploring new places with her husband Dave and their Boston Terrier.
Job Titles:
- Chairman
- Founder & Principal, Patient Authentic
Lilly is recognized as a leading voice in the rapidly growing patient engagement field, regularly lending her experience and expertise via speaking engagements from conferences to Capitol Hill. She has served as an advocate for over a decade, transitioning into patient advocacy after she was diagnosed with multiple autoimmune diseases.
Currently, Lilly serves as Founder & Principal, Patient Authentic. Previously, she worked as the Head of Client Relations at Savvy Cooperative, a patient-owned co-op dedicated to giving patients direct ways to share their experiences with health innovators, and advocating that they be fairly compensated for their contributions. Prior to her role at Savvy, Lilly lead Patient Advocacy at Clara Health where she conceived and executed patient engagement strategy and ensured the patient voice remained firmly at the center of the company. She has served in communications and advocacy roles across industry from the Institute for Healthcare Improvement to MassBio.
Lilly is proud to serve as a Board Member for the Autoimmune Association and is a Lead Patient Advisor for Clara Health, ZappRx, and Janssen.
Lilly holds a B.A. in Public Advocacy and Rhetoric and Organizational Communication from Northeastern University.
Job Titles:
- Attorney
- Treasurer
- Detroit Fire Chief
Linda is an attorney with Rossman, P.C., where she is a litigator and heads the corporate counseling and crisis group. Linda recently participated in the State Bar of Michigan Third Annual Symposium on Corporate Oppression.
Prior to law school, Linda gained significant experience in the business world, having spent several years in business management positions in Chicago after graduating from Western Michigan University, where she earned a double major in both Spanish and Environmental Studies with a minor in Biology. Linda also worked at Autoimmune Association as the Patient Education Program Specialist.
Linda was a Board of Governor's Scholar at Wayne State University Law School, earning a full-tuition scholarship for high academic achievement and graduating Cum Laude in 2018 in the top tier of her class. She further distinguished herself in the art of trial practice while in law school, winning first place in the all school mock trial competition and also achieving a position on the school's national competition trial team. She served as an Assistant Editor for the school's Journal of Law in Society and was a Board member of the Women's Law Caucus and the International Law Student's Association, while working for the Legal Advocacy for People with Cancer Clinic.
The daughter of a Detroit Fire Chief, Linda was born and raised on the eastside of Detroit, later moving to Grosse Pointe Farms. Linda was inspired by her firefighter-father to pursue a vocation that facilitated her involvement in the community and provided her with the opportunity to advocate for people in their darkest hour.
Job Titles:
- Member of the Board of Directors
Mirta Avila Santos, MD is the former Executive Director of the American Behcet's Disease Association and a nationally known speaker and patient advocate for autoimmune and rare disease patients.
Job Titles:
- Chief Executive Officer
- President
Molly serves leads efforts to improve the lives of those living with autoimmune disease by advancing the organization's four pillars: Advocacy, Awareness, Education, and Research. She is a career nonprofit and trade association professional who holds a Master of Arts in Public Policy from the University of Chicago, as well as the Certified Association Executive (CAE credential). In her spare time she enjoys staying active outdoors, fostering dogs, traveling and checking out the culinary scene wherever she is.
Molly Murray the President and Chief Executive Officer of the Autoimmune Association where she leads the organization's efforts to bring a national focus to autoimmunity, the major cause of over 100 serious chronic diseases.
Prior to joining AARDA, Molly was with the American Medical Association (AMA) where she worked to advance federal and state health care policies and AMA initiatives through partnerships with state medical associations and medical specialty organizations.
Murray's interest in patient advocacy began early in her career while at the American Cancer Society Cancer Action Network (ACS CAN) where she developed advocacy training for grassroots volunteers. These efforts culminated in Celebration on the Hill; a national event that brought together 10,000 advocates from every state and congressional district to Washington, DC to elevate cancer awareness, increase cancer-related research funding and expand access to care.
Ms. Bear is a nationally known advocate of health care reform and champion of seniors' issues. Originally an academic who has served on the faculties of several Washington area universities, including American, Howard, and George Mason, her interest in aging began when she was hired to establish a continuing education program at the U.S. Soldiers' and Airmen's Home, a facility serving thousands of military retirees.
Seeking effective ways to communicate with and motivate older learners led her to form a research and consulting partnership with public relations expert Lee M. Cassidy. Together they authored Introduction to Marketing to Mature Consumers and established The Mature Market Institute, an organization dedicated to teaching corporate America how to communicate effectively with older Americans. Their corporate clients included Fortune 500 companies and major trade associations.
In the 1980s, Ms. Bear edited three of the most influential publications in the field of aging: Aging Network News, Mature Market Report, and Journal of the Mature Market Institute. She published scores of articles and reports on seniors as consumers and was recognized as an expert in the development of "senior clubs" and other value-added programs targeting niche markets.
Ms. Bear also began to assist nonprofit organizations and industries with educational outreach on a variety of public policy issues primarily focused upon health care. During the early 1990s, her work on Medicare reform brought her to The Seniors Coalition where she served as a spokesperson and advocate, eventually becoming Senior Vice President of the organization. Her work there earned her the Champion of Medicare Award.
In 1998, she was named President and CEO of the Council for Affordable Health Insurance, and she led that organization's efforts to pass meaningful healthcare reform for Americans of all ages. She also became the national spokesperson for Citizens for Better Medicare and, in 2000, was chosen as its Executive Director. In that position, she traveled throughout the United States speaking to the media, seniors' groups, and civic organizations about the need for Medicare prescription drug coverage.
Ms. Bear currently is in private practice as a consultant to publications, industry and nonprofits on matters of health care and outreach to specialized audiences. She is a Phi Beta Kappa graduate of Tulane University and earned a master's degree from American University.
Job Titles:
- Senior Director, Programs
Olivia oversees programs with a focus on ensuring the needs of stakeholders are met in an efficient and timely fashion. Her role includes the identification, planning and execution of projects that focus on a positive impact for both the organization and patients. In her non-work life, Olivia's interests include cactus, desert preservation, running with her rescue dogs, cooking and reading.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Administrative Coordinator
Rachael is often the first point of contact for people who reach out to the Autoimmune Association. In this role, she shares resources and offers guidance to the autoimmune community, and provides valuable support to staff. Rachael has a strong background in communications and project execution, having spent over eight years in the Automotive Compliance industry in San Diego after college. Rachael obtained her Bachelor of Science degree in journalism and communication from Central Michigan University. Rachael is passionate about serving the autoimmune and immunocompromised community and bringing resources to underserved populations. In her spare time, Rachael enjoys relaxing with her fiancé Jerrold and daughter, Mila Bea.
Job Titles:
- Professor of Medicine, Emeritus / Division of Rheumatology / Department of Medicine
Job Titles:
- Member of the Board of Directors
- Director / Center for Coping / Perlman School of Medicine
Dr. Phillips, a licensed psychologist who has been in private practice since 1975, is founder and director of the Center for Coping, in Hicksville (Long Island), New York. This unique organization specializes in working with individuals and families who are looking to improve their ability to cope with medical illnesses, stress, family concerns, and other life problems. A prolific writer, having authored more than 30 books and many articles on coping with physical ailments and other psychological topics, Dr. Phillips is also a popular speaker on the subject. He gives generously of his time to Autoimmune Association events, and he is a longtime Autoimmune Association Scientific Advisory Board member.
In addition to his volunteer work with the Autoimmune Association, Dr. Phillips has served on the Board of Directors of the national Lupus Foundation of America and the Nassau Chapter of the American Heart Association. He serves on medical advisory boards of, and is the psychologist for, a number of major local and national organizations.
Dr. Phillips received his PhD from Fordham University. He is affiliated with several major professional organizations, including the American Psychological Association and the Society of Behavioral Medicine.
Dr. Phillips brings to the Autoimmune Association Board of Directors strengths in organizational development and enhancement as well as public awareness activities. In his expanded work with the Autoimmune Association, he plans to continue his presentations at public forums and additional venues to help "deliver the message" and promote the mission of the organization. Dr. Phillips sees his role in Autoimmune Association as focusing on the liaison between the medical, research, and organizational components of the Autoimmune Association's activities and the consumer advocacy and coping needs-among others.
Job Titles:
- Member of the Board of Directors
- Reviewer
Scott is currently Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders at Sanofi Genzyme.
Scott is actively sought out as a speaker and resource on health issues by the media, policymakers, public health professionals, physician key thought leaders, and patient advocacy leaders. He has been featured as an expert in the New York Times, Wall Street Journal, CNN, MSNBC, Washington Post, Baltimore Times, Medicare Reimbursement Weekly, Chicago Tribune, National Public Radio, St. Petersburg Times, Inside CMS, Dallas Morning News, Seattle Post-Intelligencer, among others.
Scott has been a peer reviewer and contributing author to the American Journal of Men's Health, a SAGE Publication. He also founded the Men's Health Caucus within the American Public Health Association. Scott is a former member of the Moravian College Alumni Association Board. Scott is currently a member of the National Alliance for Caregiving (NAC) Board of Directors.
Prior to joining Sanofi Genzyme, Scott was Vice President, Head of Global Patient Advocacy and Strategic Partnerships at EMD Serono, Managing Director, Strategic Partnerships at the American Cancer Society Cancer Action Network (ACS CAN), Senior Vice President at Men's Health Network (MHN), Public Relations Manager for Sanofi Pasteur in Swiftwater, PA, and Senior Analyst of Strategic Services at PharmaStrat, Inc. based in Flemington, NJ. Scott received his BA in Political Science with Honors and a minor in Business Management from Moravian College in Bethlehem, PA. Scott also has a Master's in Public Administration (MPA) from American University in Washington, DC.
Job Titles:
- Vice Chair
- Vice President at Horizon Government Affairs
Sloane is Vice President at Horizon Government Affairs. She specializes in health policies related to Medicare Part D, medication adherence, drug pricing, precision medicine and general health reform as well as third party alliance building and coalition management. Within Horizon, Sloane serves as Vice President of HGA's coalition on health care affordability, the Council for Affordable Health Coverage, and runs its Campaign for Transformative Therapies, which is targeted at improving access to gene therapies.
Prior to joining Horizon in 2013, Sloane worked as a Health Policy Fellow for U.S. Congressman Phil Gingrey. Sloane holds a Masters of Science in Biomedical Science Policy and Advocacy from Georgetown University and a Bachelors of Science in Zoology from the University of Florida. She has also been an Adjunct Professor in Biology at Daytona State College, an Emergency Room Technician, and completed field research on American alligators. She also volunteers for the Make A Wish Foundation.
Job Titles:
- Partner at Sidley Austin LLP
Stephanie is a Partner at Sidley Austin LLP in the Healthcare and Government Strategies groups in the Washington, D.C., office. She focuses her practice on healthcare regulatory, compliance, and legislative matters, including strategic counseling in connection with public policy proposals and implementation issues. Ms. Hales has experience in federal healthcare program coverage and reimbursement issues; government price reporting; healthcare compliance programs; managed care contracting; government agency and congressional investigations; and healthcare fraud and abuse.
She has advised numerous clients on a broad range of provisions in the 2010 healthcare reform legislation (the Affordable Care Act (ACA)) and related implementation issues, including changes to the Medicare, Medicaid, and 340B programs; the annual fee on brand-name prescription drugs; the development of the ACA-created Exchanges and Essential Health Benefits package; administrative simplification provisions and HIPAA amendments; increased transparency requirements under the Sunshine Act; and other reforms affecting government healthcare programs and the commercial insurance market.
Ms. Hales represents a wide range of clients, including pharmaceutical and biologics manufacturers, durable medical equipment suppliers, patient advocate organizations, hospitals, and physician practices. She also has represented a number of individuals on a pro bono basis in matters challenging Medicaid coverage denials, appealing disability benefits denials, and seeking relief in connection with criminal justice issues.
In spring 2012, she served as adjunct faculty for a graduate-level health policy course, titled "The Future of American Health Care System: Health Policy and the Affordable Care Act," offered through the University of Pennsylvania Department for Medical Ethics and Health Policy.
Before joining the firm, Ms. Hales served as a law clerk to the Honorable Diane P. Wood of the U.S. Court of Appeals for the Seventh Circuit (2007-2008 Term). She graduated cum laude from the University of Pennsylvania Law School in 2007. During law school, she was an Executive Editor of the University of Pennsylvania Law Review and an advocate, shift supervisor, and board member for the Custody & Support Assistance Clinic at Philadelphia Legal Assistance.
While completing her law degree, Ms. Hales also earned a Master of Biomedical Ethics (M.B.E.) from the University of Pennsylvania Center for Bioethics.