2017 Speaking Faculty

Mike Capaldi is AVP, Cardiovascular Public Affairs for Sanofi US in his 21st year with the organization.

In this role Mike interfaces with important healthcare stakeholders in order to bolster Sanofi’s commitment to the singular purpose of working passionately, every day, to understand and solve healthcare needs of people across the world.

Prior to this he led Sanofi’s civic action program which encourages employee engagement in the political process. That included leading the grassroots platform, employee PAC and other advocacy programs. Mike has also partnered with appropriate trade associations and external policy coalition groups on important healthcare industry issues. Finally, he was a member of the state government affairs team monitoring the legislative landscape in CT, ME, NH, RI and VT.

Mike has a broad set of experiences at Sanofi including work in Sales, Corporate Social Responsibility and Training & Development for 12 years where he was responsible for the T&D; of nearly 10,000 field and headquarter-based employees. Mike served as President of the Society of Pharmaceutical and Biotech Trainers (now L-TEN) in 2010-11. In 2007, he earned a Masters of Education in Corporate Training & Knowledge Management from Jones International University.

As global head of patient engagement for Janssen, Katherine leads a cross-functional team responsible for developing and driving patient engagement strategy and measuring progress over time. She and her team are focused on leading Janssen to incorporate direct patient voice early and throughout the entire product lifecycle, beginning with disease area strategies and including product development, formulation decisions and clinical trial strategies. Katherine has over 20 years of experience at Johnson & Johnson, and has consistently demonstrated a keen focus on the customer, the ability to envision and develop new approaches, and to bring people together to realize the vision. She has served in commercial and strategy roles of increasing responsibility in multiple therapeutic areas. Most recently, Katherine served as global commercial vice president for the Janssen pain Active Pharmaceutical Ingredients (API) business. Prior to that, Katherine led a cross-functional team responsible for commercial assessments of neuroscience licensing and acquisitions. Katherine began her career in women’s health and moved through increasing levels of responsibility in anti-invectives, urology and neuroscience.

Dr. Covington is currently a Senior Director and Global Head of Field Medical Strategy for Medical, Diabetes and Cardiovascular Disease Business Unit at Sanofi. She specializes in building and deploying stakeholder and patient engagement models with supporting measurement and training infrastructure to improve the health outcome strategies. Her goal is to apply these insights in strategic and innovative ways to address complex issues within healthcare systems, organizations and communities. Much of her work focuses on population-based health disparities in outcomes, operations management and cultural competency models.

Prior to joining Sanofi, Melva led both Global and US-based teams in Health Outcomes and Pharmacoeconomics across a number of therapeutic areas at Lilly and Roche Labs. She is passionate about assessing integrated data and perceptions contextually and then applying that knowledge for targeted health solutions across diverse patient populations.

She has an A.B. in Politics/Economics from The Catholic University of America, Masters of Public Health in Maternal and Child Health and Ph.D. from the University of North Carolina at Chapel Hill and MBA from the Johnson School at Cornell University. Melva has authored numerous publications, is an avid public speaker and serves as a mentor to youth throughout the United States.

Helen Fitzpatrick is Director of State Government Relations for Celgene’s Midwest region. In her role, she oversees Celgene’s legislative and political initiatives in eight states (Illinois, Indiana, Iowa, Michigan, Minnesota, North Dakota, South Dakota and Wisconsin) and supports the company’s U.S. public policy department on key patient access issues.

Before coming to Celgene, Helen was Government Relations Manager for Health Care Service Corporation (HCSC), one of the country’s largest health insurance companies operating Blue Cross Blue Shield Plans in Illinois, Montana, New Mexico, Oklahoma and Texas. Helen’s responsibilities at HCSC included supporting federal and state government relations and managing the company’s political programs.

Prior to joining HCSC, Helen led the political and grassroots advocacy programs for a national trade association and has worked on both federal and state political campaigns.

She received her master’s degree from George Washington University and undergraduate from Washington and Lee University.

John Hoffman is currently the Head of Healthcare Policy & Advocacy & for the Strategic Customer Group at J&J; North American Pharmaceuticals.

His responsibilities include ensuring unencumbered access to all J&J; NA Pharma products for patients and physicians. The Strategic Customer Group develops strategies and marketing programs for both public and private payers. In addition, the HealthCare Policy & Advocacy team partners with physician and patient advocacy groups to address issues related to patient access. The Health Policy team works closely with J&J; Government Affairs & Policy to ensure that policy decisions do not adversely affect access to our products.

John possesses over 30 years of broad experience at J&J; including Finance, Managed Care Marketing, e-Business and Corporate Strategy.

John graduated with a B.B.A in Accounting from the Universityof Notre Dame and holds an MBA from Indiana University. John is also a Certified Management Accountant (CMA). John also completed the Certificate program in Population Health from Thomas Jefferson University.

Helen has more than 15 years’ experience in in the Pharmaceutical industry, working for several companies and academic institutions in both the UK and the US. Helen joined Bristol-Myers Squibb almost five years ago, and transitioned her career from a director in public affairs and corporate communications to advocacy relations and patient engagement. Currently, Helen leads advocacy, diversity and patient engagement strategy for Bristol-Myers immunoscience portfolio in R&D.; This robust and diverse portfolio covers both inflammatory and autoimmune disease conditions. Helen interacts with a broad variety of patient facing organizations and groups to identify ways Bristol-Myers Squibb can work in collaboration with these groups to better understand and incorporate patient, caregiver and advocacy perspectives to improve our clinical studies.

Helen completed his undergraduate studies at the University of Southampton, U.K., and received her Ph.D. from the University of Cambridge, U.K., studying the molecular genetics of Multiple Sclerosis in the Department of Medicine.

Fran Kochman is the Director, National Advocacy and Alliance Development, for GlaxoSmithKline, a science-led global healthcare company dedicated to improving the quality of human life by enabling people to do more, feel better and live longer.

Fran is responsible for developing and leading the Federal Government Relations Advocacy strategy and execution in alignment with key stakeholders, in order to shape and influence the external healthcare environment within the Respiratory Community, and working with Professional Associations, and Business Coalitions. Previously, she had worked in a similar role, within the Oncology Community.

Prior to her current position, Fran was a Regional Account Director, responsible for Medicaid and Public Payers and Senior Manager, State Government Affairs Advocacy helping customers remove barriers and access medicines in the Public Sector, and garnering support for state legislative priorities by developing relationships and building coalitions with patient advocacy organizations and professional associations in New York and New England.

Fran has also held several other positions during her 30-year tenure at GSK, which include Sales Representative, Sales Trainer, Hospital Sales Representative, District Sales Manager, Market Development Manager, and Sr. Manager of Healthcare Education.

Prior to joining GSK, Fran attended the University of Rhode Island, where she completed a National Pharmaceutical Council Industry Internship Program and earned a B.S. in Pharmacy.

Michele is the Head of Patient Affairs at Enzyvant, following leadership and patient advocacy roles at the National Brain Tumor Society, bluebird bio, and Takeda Oncology. As a member of the rare disease and oncology patient communities for over a decade, Michele has dedicated her career to getting treatments to the patients who need them. Michele is a founding board member of Costs of Care and volunteers as a Sambassador for The Samfund. She received her MBA from the Yale School of Management and her MPH from the Yale School of Public Health.

Jamie Ring is the Head of Patient Advocacy at Spark Therapeutics, a leader in the field of gene therapy. In her role, Jamie is responsible for patient advocacy activities related to Spark’s disease areas of interest. Prior to joining Spark, Jamie spent 10 years at Genzyme, where she most recently served as the Vice President of Patient Advocacy and Humanitarian Programs – Rare Diseases. In that role, Jamie provided strategic oversight of all advocacy programming and managed external partnerships related to Genzyme’s global humanitarian programs which provide free therapy to hundreds of patients around the globe. Prior to Genzyme, Jamie worked at Biogen supporting patient programs for both the Multiple Sclerosis and Non-Hodgkin’s Lymphoma disease communities. Additionally, Jamie worked at the ALS Therapy Development Institute as the Associate Director of Programs, responsible for ALS disease awareness initiatives and fundraising campaigns. In 2013, Jamie was voted by PharmaVoice magazine as one of the 100 most inspiring leaders in the pharmaceutical industry.

Jamie holds a B.A. in Sociology from Union College, Schenectady, NY and a M.P.H. in Social & Behavioral Sciences from Boston University.

Barbara has been involved in patient advocacy activities for patients with rare diseases for the past 15 years at Ucyclyd Pharma and BioMarin. She joined Audentes Therapeutics as Vice President of Patient Advocacy and Medical Affairs in 2013. She has been actively involved with the National Organization of Rare Diseases, International Conference of Rare Disorders, and the Global Genes Project. Currently she serves on the Boards of the International Conference on Rare Disorders and the Batten’s Disease Support and Research Association. Additionally she is a founding board member of the Professional Patient Advocates in the Life Sciences.

She holds Bachelor’s and Masters degrees in nursing.

Stephanie Fischer is senior director of patient engagement and communication at the EveryLife Foundation for Rare Diseases, a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

The Foundation works with patient organizations, industry, academia, the Food and Drug Administration and National Institutes of Health to improve the clinical development process, and provides travel stipends through its Rare Giving program to ensure patients have the opportunity to be heard by regulators and legislators.

Prior to joining the Foundation, Stephanie spent more than 10 years focused on communication at the Biotechnology Innovation Organization and Pharmaceutical Research and Manufacturers of America. She previously worked for U.S. Representative Jim Greenwood (PA-8) for nine years until his retirement in 2004.

As a rare disease patient and stroke survivor, Stephanie is passionate about rare disease advocacy.

Kevin Fowler is a healthcare executive with over 30 years of Life Sciences experience in pharmaceutical organizations both commercial and R&D; . His career has encompassed a breadth and depth of skills and experiences. During his career , he has demonstrated leadership in sales management, training, public affairs, global marketing, patient advocacy, and patient marketing. He formed his own patient advocacy and patient engagement consulting business in 2014, “The Voice of the Patient, Inc.

Based upon his personal experiences of having a pre-emptive kidney transplant in 2004, he has a deep passion for patient advocacy and patient engagement. Kevin brings the patient voice to several organizations as a volunteer:

• Kidney Health Initiative, Patient Family Partnership Council ?
• National Kidney Foundation, Kidney Advocacy Committee ??
• Board of Directors, American Association of Kidney Patients
• Kidney Research Institute, Patient Advisory Committee ?
• Office of National Coordinator, Consumer Task Force

Levi is the founder and director of Living in the Light, an advocacy initiative utilizing the potency of photography, filmmaking and compelling personal narratives to educate about the realities of living with a rare disease and the unprecedented impact this has on families and daily life. This distinct concentration grew out of an understanding that the rare disease community is comprised of many people with many voices, while at the heart lies a unified experience of deep resilience and unique wisdom.

As a compassionate writer and photographer with a love for people and the stories they carry, Levi's approach to storytelling humanizes the experiences of people in life-limiting situations and helps to connect medical professionals, researchers, advocates, caregivers and patients alike. In 2012, he founded Living in the Light as a platform to highlight previously untold stories and shine a light on the unique wisdom and beauty of the rare disease community.

In addition to his dedicated work with Living in the Light, Levi has extensive experience traveling and working internationally with refugee populations. He holds a B.A. in Holocaust and Genocide Studies from Keene State College of New Hampshire.

STEVEN TAYLOR is the Chief Executive Officer of the Sjogren's Syndrome Foundation (SSF). Since joining the Foundation in 2003, Steve has focused on making Sjogren’s syndrome a household name by increasing awareness among the general public and healthcare professionals.

In 2012, under his leadership, the SSF Board of Directors launched their largest awareness initiative ever by setting a new organization 5-Year breakthrough goal to “shorten the time to diagnose Sjogren’s by 50% in 5 years.� This campaign will help increase awareness of Sjogren’s while most importantly helping to speed up the time it takes to receive a proper diagnosis of Sjogren’s.

In addition to increasing awareness, Steve has continue to lead the organization through major strategic initiatives including developing the first ever Clinical Practice Guidelines for Sjögren’s which will give physicians a roadmap on how to treat, manage and monitor their patients. In 2009, the SSF also started to focus on getting a treatment developed for Sjögren’s by launching an international Clinical Trials Consortium. This consortium’s goal is to work alongside industry to ensure new therapies are being investigated for Sjögren’s and ultimately, Sjögren’s patients have choices for therapies to treat their disease.

Since joining the SSF, Steve also has focused on increasing the Foundation’s income resources while energizing patients and their families. Steve has been able to triple the SSF’s fundraising budget by introducing new avenues of fundraising including individual giving as well as the SSF’s three signature events for the Foundation – the Sjögren's Walkabout, Sip for Sjögren's – A Fine Water Tasting and Team Sjögren's – Marathon Training Program. Coupled together, the SSF raises today over $2 Million annually, almost triple what it raised when Steve joined the SSF.

Steve’s non-profit career spans from his childhood where he was always involved in community service projects and fundraising for worthy causes. When asked, he will talk about his door-to-door fundraising he did for the MDA Telethon, Dance-A-Thon for Leukemia Lymphoma Society as well as #1 fundraiser for every school fundraiser.

Prior to joining the Foundation, Steve was with the American Heart Association for over 8 years, where he served in his last position as Vice President of Corporate Relations. Prior to the AHA, he served with the American Cancer Society as a Division Director. In 2006, Steve was asked to join the National Health Council’s Board of Directors where he has served two terms and held roles such as Membership Chairman, Chair-Elect, and Chairman of the Board. After a brief hiatus from the Board, Steve was asked to once again to serve on the NHC Board and began a new term in January 2015.

Steve represents Sjögren’s patients on various coalitions and committees helping to increase awareness for chronic diseases, funding for more research as well as better healthcare options. Steve has had the honor to present on Capitol Hill to the Senate Finance Committee, House Ways & Means Sub-Committee as well at various other congressional events. Steve also has a personal interest in Sjögren’s because his mother was diagnosed in 1995 with Sjögren’s, prior to him joining the SSF.

Steve has a Bachelor’s degree in Political Science from Boston University and received his Executive MBA from Auburn University in May 2013. He resides in Northern Virginia and is a proud father of three sons – Jack, Owen and Austin.

In November of 2012, Monica's twin son, Beckett, was the first to be diagnosed at Texas Children's Genetics Clinic with the gene mutation SYNGAP1 (6p21.3). When Beckett was 4 months old, she noticed he was not meeting the same milestones as his twin sister. Monica then began a journey to find answers to help her son. She started to blog about his progress and this led to building a community of parents and caregivers that are now a strong support group. She is the Founder and President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation. It is her passion to help support these families by raising awareness and creating a strong foundation that will accelerate a path to better therapies.

She retired in 2016 after 23 years in education teaching secondary science. Her new focus is on building the programs and mission of Bridge the Gap – SYNGAP Education and Research Foundation. In addition to leading the foundation, she currently is consulting on rare disease non-profit organization strategies and advocates for rare disease legislation at both the federal and state levels. She is a graduate from East Texas Baptist University with a Bachelor's of Science in Biology/Psychology (1991) and Secondary Certification in Education (1995). She is married to Chris Weldon and has five beautiful children, Haleigh (25), Taylor, USMC (22), Sawyer (20), and the twins Beckett & Pyper (9). She was a Global Genes 2015 & 2016 RARE Champion in Advocacy Award nominee for her work in the rare disease community.

Tonya Winders. MBA is currently the President and Chief Executive Officer of Allergy & Asthma Network, the leading patient advocacy organization dedicated to ending needless death and suffering due to asthma, allergies and related conditions.

Tonya has over 17 years experience in leadership roles within the allergy and asthma industry. From sales and marketing leadership to managed markets access, she has worked tirelessly to ensure patients have access to effective diagnostic and treatment tools.

Tonya serves on several expert panels including NAEPP and NIAID Immunotherapy Utilization. Furthermore, she is on the board of directors of Not One More Life, American Respiratory Care Foundation and is the current president of the Global Asthma & Allergy Patient Platform.

Personally, Tonya is the mother of five children, four of whom have asthma and/or allergies, ranging in age from 12-18 years old. She is a fierce patient advocate who overcame cancer twelve years ago. She now enjoys spending time with her husband of twenty years Brian Winders and cheering on her children in various sports.