Board Members

Betsy Bogard

Betsy Bogard

Program Leader, Early Development
AVROBIO
Nicole Boice, Founder RARE-X

Nicole Boice

Co-Founder, Executive Director
RARE-X
Wendy Erler

Wendy Erler

VP of Patient Experience
Alexion Pharmaceuticals
Peter Goodhand

Peter Goodhand

CEO
Global Alliance for Genomics & Health
Walt Kowtoniuk, PhD

Walt Kowtoniuk, PhD

Venture Partner
Third Rock Ventures
Craig Martin

Craig Martin

President, Chief Engagement Officer,
Rithm Health
Katherine Maynard

Katherine Maynard

Principal
PWR
Angeli Moeller, PhD

Angeli Moeller, PhD

VP Head of Global Data Assets, Pharma Digital Transformation & IT, Bayer
David Pearce, PhD

David Pearce, PhD

President, Innovation & Research
Sanford Health Systems
Anthony Philippakis, MD PhD

Anthony Philippakis, MD, PhD

Chief Data Officer
Broad Institute of Harvard and MIT
John Reynders, Phd

John Reynders, Phd

VP, Data Sciences, Genomics, & Bioinformatics, Alexion
Morrie Ruffin

Morrie Ruffin

Managing Director
ARM Foundation for Cell & Gene Medicine
Alvin Shih, MD

Alvin Shih, MD

President and CEO
Disarm Therapeutics
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Betsy Bogard

Program Leader, Early Development

Betsy Bogard works in the rare disease community to enable development of transformative therapies. She is currently a team leader at AVROBIO, a biotechnology company based in Cambridge, MA developing gene therapy as a potential one-time treatment option for rare diseases. She also chairs the Research Committee for the International FOP Association, a non-profit patient organization for the rare disease fibrodysplasia ossificans progressiva (FOP). Ms. Bogard has nearly 20 years of experience in biotechnology in areas that include program leadership, medical affairs, disease registries, health economics, and patient engagement. She has a master’s degree in health policy and management from the Harvard School of Public Health. Ms. Bogard lives in Somerville, MA with her two sons.

Favorite Quote: “In the face of overwhelming odds, I’m left with only one option. I’m going to have to science the sh*t out of this.” –Mark Watney, “The Martian”

Nicole Boice

Co-Founder, Executive Director, RARE-X

Nicole Boice is a committed champion of families affected by rare disease. She founded Global Genes in 2008 and grew it into one of the most notable rare disease advocacy organizations focused on educating and empowering patients/advocates throughout their journey. Impact includes a membership of over 750 patient organizations, collaborations with over 100 biopharma and academic research partners, numerous support programs and educational events. RARE-X grew out of the need to provide more tools and resources for families needing to become better equipped data stewards and participants in research. A board member of several patient organizations and advisory roles within Biopharma, Nicole remains an important voice for rare disease patients globally.

Favorite Quote: “I have two; Be the Change you wish to see in the world.- Mahatma Ghandi. If it was easy, someone else would have done it already.”

Wendy Erler

VP of Patient Experience, STAR and Advocacy at Alexion Pharmaceuticals

With a true passion for patients, and dedication to connecting people in need to resources, services and people, Wendy has built her patient advocacy career in many rare disease communities and oncology. Wendy Erler is the Vice President of Patient Experience, STAR and Advocacy at Alexion Pharmaceuticals where she is responsible for leading the enterprise patient centered innovation model to gather and incorporate patient insights throughout the drug development and commercialization processes. She leads the Global Patient Advocacy function and has responsibility the advocacy team. Previously, Ms. Erler was on the executive leadership team at Wave Life Sciences where she led Patient Advocacy and Commercial. During her tenure, she built both functions and developed the commercialization strategy as the organization initiated its rare disease clinical trials in Duchenne muscular dystrophy and Huntington’s disease. Prior to Wave, Wendy held roles of increasing responsibility at Biogen, starting in field sales and advancing through the commercial organization before serving as the patient advocacy lead for several rare disease programs including ALS, SMA, IPF, and Hemophilia. In these roles she gained experience in Newborn Screening, public policy, HTA’s, and bringing the patient voice into all aspects of drug development.

Wendy serves on the Life Science Cares Board of Advisors, the Huntington Disease Society of America Board and the Board of the Jett Foundation.

Wendy graduated from Miami University and earned her MBA from St. Joseph’s University.

Peter C. Goodhand

CEO, Global Alliance for Genomics and Health

Peter Goodhand is a leader in the global health sector, holding senior executive and board member positions in the health research advancement community. He played a key role in the creation of the Global Alliance for Genomics and Health (GA4GH) to accelerate progress in genomic research and medicine and in June 2013 and is currently the CEO of the organization. Prior to his role with GA4GH, he was the President and CEO of the Canadian Cancer Society, and before joining the charitable sector, had a 20 year career in the global medical technology industry. In addition to his role at GA4GH he sits on several international boards in areas of genomics, cancer and rare diseases. Peter also had a 12-year experience as a patient advocate, caregiver and navigator throughout his family’s battle with a rare cancer.

Favorite Quote: “All we have to decide is what to do with the time that is given to us”

Walt Kowtoniuk

Venture Partner, Third Rock Ventures

Walt is the father of two who spends his days playing with is kids, teaching them about the world, and having fun watching then grow up. Walt is also passionate about making a difference for patients. He spends his days focused on genetics and genomics and the insights they bring into disease biology. Walt works where science meets business and strategy, enabling insights from the lab to become the next generation of medicines that can change lives. He is enthusiastic about launching companies with emphatic, truly patient-centric cultures that effectively and efficiently execute drug discovery. He places priority on taking the time to listen to the patients whom we endeavor to help, recognizing that the value we aim to create is defined by the magnitude of the difference we can make in their lives.

Favorite Quote: “Those who think they can, and those who think they can’t are both right.”

Craig Martin

President, Chief Engagement Officer, Rithm Health

Craig’s background includes nearly three decades of experience across interconnected health, life science and technology markets – including biotech, biopharma, devices, diagnostics, health IT, analytics, digital health, and healthcare. His expertise spans strategy, branding, positioning, corporate communications, market development, pipeline/product communication, digital influence, advocacy and policy, working with virtually every health system stakeholder. He serves as chair of the Corporate Alliance and board member for Global Genes (a pan-rare disease organization), is on the board of the Fibrolamellar Cancer Foundation (a rare cancer advocacy group), and is also a co-Founder of RARE-X. He is a commentator and panelist on key issues impacting innovation in health markets and has held leadership positions with consultancies based in Cambridge, Washington, D.C., New York and Brussels.

Favorite Quote: “The people who are crazy enough to think they can change the world are the ones who do.” – Steve Jobs

Katherine Maynard

Principal, PWR

Katherine Maynard is a healthcare communications strategist with extensive experience in alliance development, media relations, issues management, and brand positioning. For more than two decades, she has built connections with patient advocates, academia, and the healthcare industry to create innovative education initiatives that translate emerging scientific developments and communicate the patient experience. She is currently a principal at PWR — a multi-disciplinary team of scientists, lawyers, and communications professionals who apply deep scientific, legal, regulatory, and health policy expertise to develop science-based solutions to improve patient and public health.

Favorite Quote:  – “The world is changed by your example not by your opinion” – Paul Coehlo

Angeli Moeller, Phd

VP Head of Global Data Assets, Pharma Digital Transformation & IT, Bayer

Dr. Angeli Moeller has two roles at Bayer Pharmaceuticals, she co-leads the artificial intelligence work stream and is responsible for the research digital investment strategy. Prior to joining Bayer she worked as a data scientist for translational medicine at Thomson Reuters and researcher at Cancer Research UK and the Max Delbrück Center for Molecular Medicine. Moeller is driving work at Bayer to employ AI to help get the right treatment to the right patient at the right time. Bayer Pharmaceuticals invests in initiatives that use AI to drive top-line and bottom-line growth, while accelerating digital transformation. As a proponent of pre-competitive collaboration, she also sits on the executive committee of the Alliance for Artificial Intelligence in Healthcare (AAIH).

Favorite Quote: “Being wrong may be less costly than you think…whereas being slow is going to be expensive for sure.” – Jeff Bezos

David A Pearce, PhD

President, Innovation & Research, Sanford Health Systems

David Pearce is President of Innovation and Research for Sanford Health. He completed his undergraduate Bachelor of Science Degree with honors in biological sciences at Wolverhampton Polytechnic in 1986. He gained his PhD in 1990 at the University of Bath, UK, and did postdoctoral training at the University of Rochester, U.S., and Oxford University, UK. Dr. Pearce heads the leading lab in Juvenile Batten disease research. He has been researching Juvenile Neuronal Ceroid Lipofuscinosis (Batten disease) since 1997. His research has led to the first clinical trial for Juvenile Batten disease. He has published over 100 research papers on Batten disease. He also oversees a national registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS). He has served on numerous NIH review committees, has organized rare disease workshops for the National Institute for Neurological Disorders and Stroke (NINDS) arm of the National Institutes of Health (NIH) and the vice chair of the International Rare Diseases Research Consortium (IRDiRC).

In his role as President of Innovation and Research at Sanford he is responsible for overseeing the development of research programs across Sanford’s nine-state footprint, including more than 450 researchers, eight research centers and more than 300 ongoing clinical trials. With this, he is also responsible for commercialization of select research strategies, as well as integrating Sanford Research operations into Sanford Health International Clinics. Driven by Dr. Pearce’s passion for developing patient-centered, impactful research programs Sanford Research is uniquely positioned to provide translational research that can bring important discoveries from bench to bedside, improving the quality of care.

Favorite Quote: “Always live life to the fullest.”

Anthony Philippakis

Chief Data Officer, Broad Institute

Philippakis is committed to bridging the gap between data sciences and medicine. He trained as a cardiologist at Brigham and Women’s Hospital, with a focus on caring for patients with rare genetic cardiovascular diseases. At the Broad Institute he directs the Data Sciences Platform, an organization of nearly 200 software engineers and computational biologists that develops software for analyzing genomic and clinical data. In addition to his roles at the Broad Institute, Philippakis is a Venture Partner at GV, focusing on machine learning, distributed computing, and genomics.

Philippakis received his M.D. from Harvard Medical School and completed a Ph.D. in biophysics at Harvard. As an undergraduate, he studied mathematics at Yale University, and later completed the Part III (equivalent to M.Phil) in mathematics at Cambridge University.

Favorite Quote: “In theory, there is no difference between theory and practice. In practice, there is.”

John Reynders, Phd

Vice President, Data Sciences, Genomics, and Bioinformatics, Alexion

John Reynders leads Alexion’s Data Sciences, Genomics, and Bioinformatics (DGB) organization in the design, building, and deployment of DGB solutions spanning R&D, Commercial, Strategy, and Business Development. John has delivered key capabilities Alexion including: a novel graph-database of the entire rare-disease landscape annotated with prevalence, severity, competitive intensity, and genetic signature; a genomics-based rare-disease patient prevalence platform to inform licensing/acquisition opportunities; AI-based phenotype- and genome-driven rare-disease diagnosis decision-support systems; genomic-based analyses in support of clinical trial design; partnerships with commercial leaders to provide genomic and data-sciences insight in support of launch strategies; key opinion leader engagements in core therapeutic areas; and pathway/network analysis techniques to inform target selection across multiple discovery programs. John has received many industry recognitions including 2 BioIT Judge’s awards, a Rare Genes Champion of Hope award, publication in Science: Translational Medicine, part of the GUINNESS Book of World Records effort for fastest genetics-based diagnosis, and recognition by the National Human Genome Research Institute as a top 10 most significant advance for genomic medicine in 2019. John has a MBA from Northwestern University – Kellogg School of Management, a PhD in Applied and Computational Mathematics from Princeton University, and a Bachelor of Science degree in Mathematics from Rensselaer Polytechnic Institute.

Morrie Ruffin

Managing Director, ARM Foundation for Cell and Gene Medicine
Managing Partner, Adjuvant Partners

Mr. Ruffin has more than 25 years of experience in the regenerative medicine, biotech, and healthcare industries. Prior to founding Adjuvant Partners, he was the Chief Executive Officer of LifeTech Innovations, LLC, a business development consulting firm based in Bethesda, MD. Prior to his position at LTI, Mr. Ruffin was Executive Vice President of Capital Formation and Business Development at the Biotechnology Industry Organization (BIO), the largest trade organization representing the biotech and drug development industries. Joining BIO in 1994 as one of its original employees, Mr. Ruffin was responsible for building the organization’s global business development and investor outreach programs focused on helping companies raise capital and identify strategic partnering and licensing opportunities. This BIO business development franchise is now the largest in the world, with operations in the US, Europe, and Japan.

Mr. Ruffin has also founded and led several other key industry organizations in the life sciences sector with a primary focus on cell and gene medicine and the application of artificial intelligence in healthcare. From September 2009 – December 2019, he co-founded, built and led the Alliance for Regenerative Medicine (ARM), the foremost global advocacy organization representing the interests of the cell and gene therapy and tissue engineering communities. In January 2018 he led the effort to establish the ARM Foundation for Cell and Gene Medicine and has served on its Board of Director’s and as the Executive Director since its launch. He also co-founded the Standards Coordinating Body for Regenerative Medicine and continues to serve on its’ Board of Directors and was founder and Board member of the Interoperable Informatics Infrastructure Consortium (I3C), an international standard setting body for the bioinformatics industry. Most recently, Mr. Ruffin co-founded the Alliance for Artificial Intelligence in Healthcare (AAIH) in 2019, a multi-stakeholder advocacy organization comprised of technology developers, pharma companies, and research organizations with a common goal of realizing the potential for AI in healthcare to significantly improve quality of care.

Prior to his work in the private sector, Mr. Ruffin worked for U.S. Senator Arlen Specter for five years as his senior legislative assistant. In his early career he worked for the Systems Planning Corporation International and the Center for Strategic and International Studies. Mr. Ruffin received his MA in International Studies & Economics from the Johns Hopkins School for Advanced International Studies (SAIS) and his BA from the University of Virginia.

Favorite Quote: “Don’t sweat the petty things and don’t pet the sweaty things.” — George Carlin

Alvin Shih, MD

President and Chief Executive Officer, Disarm Therapeutics

Alvin is an experienced biopharma executive with more than 15 years of clinical and drug development experience, encompassing the full spectrum from discovery/translational to post-marketing programs. He has worked in multiple therapeutic modalities, including cell/tissue therapy, enzyme replacement, and small molecule approaches. Alvin is a rare disease specialist with a successful track record in building and managing complex organizations to accomplish end-to-end drug development.
Alvin was most recently CEO of Enzyvant Therapeutics, a development-stage biotechnology company. Prior to Enzyvant, he was Executive Vice President and Head of R&D at Retrophin, where he managed the development and progress of a diverse pipeline encompassing rare neurological and renal diseases. Earlier in his career, he was a founding member of Pfizer’s rare disease research unit. He was also previously a management consultant for L.E.K. Consulting and McKinsey & Company.
Alvin holds an M.D. from the University of Alabama and an MBA from the Kellogg School of Management at Northwestern University. He completed his residency training in internal medicine at Massachusetts General Hospital.