Our Team - Cure Rare Disease | We bridge the gap between researchers and a cure through customized medicine, by supporting families and educating the global community.

Rich Horgan

Rich Horgan is the Founder and President of Cure Rare Disease. He has a deep passion for Duchenne Muscular Dystrophy (DMD) and other rare diseases. With a younger brother impacted by the disease, Rich has a strong interest in accelerating promising treatments for the disease. He formed a collaboration with world-class researchers and clinicians to pioneer the rapid development of customized therapies for Duchenne and other rare diseases. Prior to making his foray into biotech, Rich had extensive experience working in new business development at Corning Incorporated where he led the successful launch of a new Willow® Glass product. He also launched a successful car washing business in upstate New York. He holds a BS from Cornell University where he graduated summa cum laude and an MBA from Harvard Business School where he was awarded the Blavatnik Fellowship for Life Science Entrepreneurship.

Dr. Melissa Hunter-Ensor

Dr. Melissa Hunter-Ensor is a board member of Cure Rare Disease. She is also Greenberg Traurig’s Global Patent Prosecution Group. Melissa focuses her practice on the intellectual property and commercial needs of clients in the life science industry, encompassing pharmaceutical, biotechnology, chemical agricultural, diagnostics and medical device companies. Melissa has experience representing clients throughout the business cycle, from start-ups and universities to global pharmaceutical companies, with patent portfolio management and strategic alliances, as well as litigation and pre-litigation strategy. She also assists venture capital firms and other investors in assessing the IP risks of target investments and conducts IP patent and licensing due diligence in connection with life science technology transactions.

Before becoming a lawyer, Melissa earned a Ph.D. in neuroscience from the University of Pennsylvania and her thesis research resulted in a first author paper in Cell. She followed this accomplishment with a four-year post-doctoral fellowship at the Massachusetts Institute of Technology laboratory of Nobel laureate H. Robert Horvitz where she was a Jane Coffin Childs fellow.

Marshall D. (Mark) Smith

Mark joined Occidental Petroleum as Senior Executive Vice President and Chief Financial Officer in August 2014 in preparation for the successful IPO and spin of its subsidiary, California Resources in December 2014. He has over 35 years of progressive experience in all aspects of the energy industry. Previously, Mr. Smith served as Senior Vice President and CFO of Ultra Petroleum from July 2005. Prior to Ultra, he most recently served as Vice President, Upstream Business Development for Constellation Energy and previously served as Vice President, Business Development, and as a member of the management committee, for J.M. Huber Energy. During fourteen years of corporate and investment banking with BMO Capital Markets (formerly Bank of Montreal and affiliates), Mark held advisory roles to a diverse range of energy companies including Texaco, Union Pacific Resources, Oryx, Pennzoil, and Anadarko.

Mr. Smith holds a B.S. degree in Petroleum Engineering from the University of Oklahoma, where he was a distinguished scholar, and an MBA with highest honors from Oklahoma City University. He has also completed executive business development programs at Harvard Business School and Stanford Graduate School of Business.

Mr. Smith was named Best CFO of the Year for 2013 for a Medium Public Company by the Houston Business Journal and Best CFO of the Year for 2017 for a Large Public Company by the San Fernando Valley Business Journal.

Mr. Smith continues to be a passionate supporter and involved with muscular dystrophy initiatives for decades. He first came to know of the inspiring strength and courage of those living with the disease as a young boy, as his cousin was impacted. He admired the courage, determination and grace she exhibited as she faced this debilitating disease. Inspired by her and driven by his desire to help kids and adults with neuromuscular diseases live longer and grow stronger, he is passionate about using his skill set to help fund breakthrough research related to rare diseases.

Kwesi Acquay

Kwesi Acquay is an associate at J.P. Morgan in the Technology Investment Banking Group. He is the founder of the J.P. Morgan Digital Initiative: the first initiative dedicated to digital ecosystems and startup engagement across NY & Boston Investment Banking practices.

In addition to Cure Rare Disease, Kwesi serves on the Board of StEP, an education technology startup in Worcester, MA.

Kwesi graduated magna cum laude with a B.S. in Applied Economics and Management from Cornell University in 2014. He is the recipient of the Richard A. Church ’64 Senior Service Award, awarded by the CALS Alumni Association in recognition of leadership and service to Cornell University. He serves on the Advisory Council for Entrepreneurship at Cornell.

Kwesi remains passionate about innovation and how it can make a difference in the community.

Carolina Alarco

Carolina Alarco currently serves as a board member for Cure Rare Disease. She has more than 25 years of experience in the biopharmaceutical industry in Cambridge, Massachusetts. Carolina has recently founded BioStrategy Advisors LLC, a strategic business consulting firm servicing small and medium-sized Biotech companies in the Massachusetts area. Specializing in biotech start-up corporate strategy, early commercial planning for assets in early-stage clinical development and commercial product launch planning for later-stage specialty therapeutics and/or orphan drugs/rare diseases.

Carolina’s passion is to bring innovative therapies for rare diseases to patients in need around the world. She has spent most of her career working in the Rare Genetic Disorders/Orphan Drugs area. Most recently, Carolina was President of Global Marketing and International Markets at Novelion Therapeutics where she lead the marketing function and the International region. Prior to this, she was President of International at Aegerion, where she built the geographical footprint of the company through innovative go-to-market strategies. Carolina was a Vice-President at Genzyme, where spent 15 years in several roles of progressive responsibility. In her tenure at Genzyme, she played a pivotal role in several product launches globally, new market development and geographical expansion.

Carolina also has a strong philanthropic focus on causes such as children in need, women in science and Latino affairs. In addition to her role at Cure Rare Disease, she has recently been appointed by Governor Baker to the Massachusetts STEM Advisory Council. She currently serves as a Founding Member and Past-Chair of the Latino Council at Boston Children’s Hospital Trust. She is co-founder and member of the Steering Committee of Latinos in Bio. She has been past-chair and Board Member of the New-England Latin America Business Council, as well as, other organizations. She holds a Bachelor of Science in Business Administration from the University of Lima (Lima, Peru) and a Graduate Degree in Business and Management from Harvard University (Cambridge, MA, USA).

Stephanie Herzog

Stephanie Herzog currently serves as a board member for Cure Rare Disease. Stephanie is the CEO/Founder/Owner of a boutique Home & Commercial Interior Design Firm in Connecticut with proven specialties ranging from interior furnishings to complete custom space builds.

Stephanie has over 15 years experience in designing, team leading, project execution, and completion in the robust space she serves.

Stephanie’s passion for Cure Rare Disease and the research strategies for curing Genetic Disorders was born from the recent DMD diagnosis of her four year old son, Max. Throughout Stephanie’s journey she was fortunate enough to meet Rich Horgan and be introduced to the amazing ground-breaking research and work his team is doing for Muscular Dystrophy and similar rare genetic diseases.

Stephanie also serves on the Branford Arts and Culture Alliance Board in Branford, CT as well as the Board of Governors for the Pine Orchard Yacht & Country Club, chairing the Entertainment Committee.

Karen Morales

Karen Morales spent over 20 years in nationally recognized agencies solving Fortune 500 marketing and advertising challenges before she founded her own company, Marketing Magnet, in 2017. Marketing Magnet provides in-depth agency services focused on efficiency, fun, and fast results for businesses of all sizes.

Karen was also diagnosed with LGMD2b when she was a junior in college. Two decades later, she is a mom, survivor and advocate for those with health challenges. She is eager to bring hope and change to the disease community after spending so much of her time and personal resources on navigating the unpaved medical road of a rare disease.

Jon Bircher

Jon Bircher serves as a board member for Cure Rare Disease and provides a footprint for us in Europe. Jon has worked in the health and biopharmaceutical industry for more than 20 years and as Chief Commercial Officer and board director at Cello Health is responsible for supporting business growth through sales, marketing, innovation and strategic partnerships. Cello Health is a global strategic advisory firm with deep experience and relevant expertise in science, insights, strategy and commercial.

Jon loves combining his leadership, critical thinking and strategic planning skills to tackle the industry’s most difficult commercial challenge. Over the years he has worked across multiple therapy areas and geographies with a focus on helping companies bring new therapies to the patients that need them. In his board role Jon looks forward to applying these skills and experiences to advancing the cutting-edge work of CRD in developing customized therapeutics at unparalleled speed, starting with DMD.

Sara Cole

Sara Cole currently serves as a board member for Cure Rare Disease. She is currently working at IQVIA as a Life Sciences Strategy Consultant. Prior to that, she completed her MBA in the Health Sector Management Program at Boston University. While there, she spent time working in an operations and finance role within the research and development team at Tesaro. Before coming to Boston, she worked as a Process Technician in research and development for Corning Incorporated. There, she focused on process improvement and new process development for the Chemical Analysis Department. Sara is originally from Corning, NY and attended University at Buffalo, earning a BS in Medicinal Chemistry.

Dr. Naomi Hoyle

Dr. Naomi Hoyle is excited to be part of Cure Rare Disease. This is a group that has patient advocacy as its top priority. With a 12 year old son affected by DMD, we are ready for a cure, now! Personalized medicine is the way to propel this forward and make an opportunity become a reality for all of our boys. Dr. Hoyle has been studying bacteriophage since 2002, first as an undergraduate at the Evergreen State College, and later with the G. Eliava Institute in Tbilisi, Georgia. She has been working as the International Relations Manager at the Eliava Phage Therapy Center for the past 8 years, facilitating treatment of antibiotic resistant infections for patients from more than 70 countries around the world. She obtained her MD from Tbilisi State Medical University and specialized in Pediatric Emergency Medicine completing residency at the TSMU G. Jvania Children’s Hospital in Tbilisi.

She is a founding member of the Eliava Foundation and is also a Scientific Advisor to the Phagebiotics Foundation. She currently lives with her husband Vakho, and three boys in Washington State.

Renata Hoyle Maybruck

Renata Hoyle Maybruck has worked in high-level fundraising for non-profit organizations for the past 20 years and has raised over $30 million to date in leadership roles. She has a strong background in major gifts and capital/comprehensive campaigns, board management and strategic planning.

Renata has a Master of Science degree from the London School of Economics in Anthropology and Development. She currently serves as the Vice-President of her local Women In Business chapter and a Board Member of a local non-profit serving at-risk youth in her community.

Renata has joined the Cure Rare Disease board to elevate awareness and raise funds for the crucial work CRD is doing in honor of her beloved nephew who has Duchenne Muscular Dystrophy and for children across the world who will benefit from the technology advancement. She lives in Washington State with her husband, two children and two bunnies.

Liz Duffy

Liz Duffy is the Director of Alumni Relations at Greenwich Country Day School (GCDS), her alma mater. She received her Bachelor’s degree from Hobart and William Smith Colleges and her Master of Public Administration from NYU. As a Director in the GCDS Development office, Liz manages fundraising efforts across more than 4,000 constituents and implements programming and events for the alumni community. Prior to GCDS, Liz worked at Tiger Foundation in New York City. As Program Officer, she conducted comprehensive research for grant renewals and new grant requests for funding areas including education, employment, youth and families, and criminal justice. She serves on the Associate Board of Waterside School, a PK-5th Grade independent school serving children and families regardless of limitations in income or circumstance. Liz lives in Greenwich, CT with her husband and two children, Quinn (6) and Ned (2). Ned was diagnosed with DMD in July 2019, three weeks before his second birthday. Liz, together with Tim, hope to bring development knowledge to Cure Rare Disease.

STAFF

Alan H. Beggs, PhD

Scientific Director

Alan H. Beggs PhD. joins Cure Rare Disease as our Scientific Director and is excited about the mission of developing customized therapeutics. Alan is also the Director of the Manton Center for Orphan Disease Research at Boston Children’s Hospital and Sir Edwin & Lady Manton Professor of Pediatrics at Harvard Medical School. Following undergraduate studies at Cornell University, Dr. Beggs obtained his PhD in Human Genetics at Johns Hopkins, with subsequent postdoctoral fellowship training in medical and molecular genetics at Johns Hopkins and Boston Children’s hospitals. Throughout his career, he has used the toolset of human molecular genetics to study normal biology and disease processes in a variety of diseases with a particular focus on congenital myopathies, muscular dystrophies, and related neuromuscular diseases. In this role, and as founding director of The Manton Center, he has led the discovery of numerous new disease genes and has pioneered the development of gene therapy for one such condition, myotubular myopathy. The Manton Center provides resources and a training environment to support research on understudied “orphan diseases” through support of junior faculty with multiyear career development awards, pilot project grants, and access to the Center’s Gene Discovery Core (GDC), which provides genetic and genomic analysis services, and a rich collaborative environment for interactions between clinicians, researchers and bioinformaticians. Dr. Beggs has been a standing and ad hoc member of numerous National Institutes of Health grant committees and reviewer for the Muscular Dystrophy Association, March of Dimes and other national and international medical research foundations. He is a member of multiple scientific advisory boards, and boards of directors for both nonprofit and commercial entities.

Kirsten Parisi

Community Engagement

Kirsten Parisi has devoted her 20-year career to serving as a social worker in the disabilities community, helping people with physical and mental disabilities cope with the challenges of their daily lives. She didn’t realize how her professional life in the disabilities community would foreshadow her personal life until 2013, when her two young sons were diagnosed with Duchenne muscular dystrophy, and she was identified as a carrier. Since then, she has worked tirelessly to heighten awareness and understanding of Duchenne muscular dystrophy. At Cure Rare Disease, Kirsten is dedicated to strengthening relationships within the rare disease community to foster collaboration and research strategies for curing genetic disorders. She holds a Bachelors from Northeastern University, and a Masters from Assumption College in Rehabilitation Counseling.

Rachel Duncan

Director of Social Media, Digital Marketing

Rachel Duncan is the director of social media and digital marketing for Cure Rare Disease. Rachel graduated magna cum laude from the College of Communication at Boston University. She handles all of our social media as well as all Cure Rare Disease marketing materials and graphic design. Rachel joined the CRD team in May and says she has been consistently inspired by the incredible work it does every day. She’s both honored and proud to be part of something so special to her. Say hi to Rachel by DMing Cure Rare Disease on any of our social media accounts!

Walker Penfield

Massachusetts DECA / Cure Rare Disease Liaison

Walker Penfield is a junior at Nipmuc Regional High School in Upton, Massachusetts. He serves as the Cure Rare Disease-DECA Liaison and through this position, coordinates the activities of both organizations to help advance the fight against rare diseases. Walker first learned of Cure Rare Disease and its mission through a summer internship, where he helped to establish the partnership between Massachusetts DECA and CRD. As an international organization with over 200,000 student members, DECA prepares emerging leaders and entrepreneurs in the areas of marketing, finance, hospitality, and management. Walker is a Massachusetts DECA State Officer and has competed on an international level for the past two years. As part of a project to promote financial literacy within the youth of his community, Walker developed an app called “Split the Difference,” which teaches students basic financial principles through a fun, visual game. You can check it out on the AppStore as of December 20th, 2019! This experience taught him that you can use any of your skills and passions, like programming, to have a positive impact on your community. Walker carries this mindset into his work at Cure Rare Disease and is honored to be a part of this great team.