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 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.
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 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.
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 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.
Jessica Curran is a first-grade teacher at Matthew Paterson Elementary School in Patterson, NY (2005-Present) Before that Jessica was a fourth-grade teacher at Matthew Paterson Elementary School (2004-2005) Prior to that Jessica was a fourth-grade teacher at West Patent Elementary School in Bedford, NY (2001-2003).
In her twenty years of experience as an elementary school teacher Jessica has held positions on multiple elementary school committees such as: site base and safety committee, language arts committee, arts in education committee, elementary principal hiring committee, and Positive Behavior Interventions and Supports in the Classroom (PBIS) committee.
Jessica received her Bachelor of Arts in Elementary Education (K-6) and a Bachelor of Science in Psychology from Keene State College in Keene, NH. She also received her master’s degree in Literacy from Manhattanville College in Purchase, NY. She continues to take graduate courses to build her knowledge and keep up with the everchanging strategies and approaches of teaching young children.
Jessica’s son Conner was diagnosed with Duchenne Muscular Dystrophy in 2015. From that point on she was committed to raising money for all the kids with Duchenne Muscular Dystrophy. Jessica and her husband, Christopher, hosted charitable events that have raised over $800,000.000 for the 501(c)3 Parent Project Muscular Dystrophy.
Kindness Over Muscular Dystrophy, a 501 (c)3 charity was formed by Jessica and her husband in 2019 in order to fund scientific research to cure Duchenne Muscular Dystrophy as well as benevolent assistance and advocacy to those in need.
Jessica has been active in advocacy in her home state of Connecticut, Capitol Hill and the FDA. Working directly with Governor Ned Lamont, Jessica spearheaded a campaign to have the Governor sign a proclamation proclaiming that the state of Connecticut recognizes September 7th as World Duchenne Awareness Day. With that proclamation, Connecticut, became the second state in the nation to recognize World Duchenne Day.
On Capitol Hill, Jessica has advocated for Duchenne appropriations with her respective congressional leaders and Senators. Additionally, Jessica has testified before the FDA in a patient-focused compass meeting as part of the FDA’s Patient-focused Drug Development initiative with members of the CDC, SSA and CMS in attendance.
Jessica has been asked to speak at events led by Parent Project Muscular Dystrophy, Springboard Enterprises, Ask Bio and Pfizer. She participated in a 2020 ACA press conference with Senator Richard Blumenthal where she gave an impact statement on how the protections under the Affordable Care Act are vital for people with complex medical issues. Jessica has also been interviewed by NPR, Pix 11NY, Fox CT, News 12 CT, NBC CT, The Hartford Courant, The Ridgefield Press and The Lewisboro Ledger about her experiences raising a son with Duchenne, participating in a Duchenne gene therapy clinical trial and how the ACA impacts her family.
Jennifer Handt has dedicated her career to promoting ideas and missions with words. As Principal of JHA Communications, Jennifer provides editorial direction and copy/content execution for market-leading, cross-sector organizations of all sizes and subjects, collaborating with clients to most effectively communicate messages and spark action. Published in Cognoscenti/WBUR, The Wall Street Journal, The Boston Globe, The Hill, Good Morning America/ABCNews, Connecticut Cottages and Gardens, and institutional publications and blogs, she takes a storytelling approach to distill messages to their essence and connect authentically with audiences, from consumers and patients to physicians and business leaders.
Jennifer previously held nonprofit, advocacy and corporate roles that cultivated her point of view. As Director of Communications for the Network for Excellence in Health Innovation (NEHI), Jennifer helped to elevate a regional group of like-minded leaders to a national organization transforming possibilities for health care and medicine. In Washington, as Deputy Director of Communications for the Business Roundtable, the lobbying association of FORTUNE 200 CEOs, Jennifer developed key communications in support of business priorities pending in Congress including health IT legislation co-sponsored by Senator Ted Kennedy. Her issue briefs, policy papers, and public comments played a pivotal role in furthering issue awareness, advocacy, and legislative progress. Jennifer also held prior roles at Fidelity Investments, where she developed speeches for company leaders, and at The Dana-Farber Cancer Institute, where she supported cause marketing program development. She began her career in public relations with Brodeur Worldwide and Solomon McCown & Company.
Jennifer holds a B.A. in English and communications cum laude from Simmons College, where she was a member of the honor society. She lives in Darien, Connecticut with her husband, Rick, and sons Henry (10) and Charlie (3), who was diagnosed with Duchenne muscular dystrophy in 2020.
Keven Lin is the founder of Lin Capital Management, a technology-focused partnership. Prior to that, he has launched and worked for various internet startups, and as a computational biologist at BC Genome Science Centre. He attended University of Waterloo with a BMath in Computer Science.
Keven lives in Vancouver, BC with his wife Patricia and three children. His son Damian was diagnosed with DMD in 2017 after the family spent six months travelling across Asia. Keven believes in equality through education and technology, and volunteers to teach coding to a local homeschooling community.
Rose Klassen spent the first decade of her career as an intelligence analyst in the Department of Defense, using her background in data analytics to lead a team to solve the agency’s toughest national security problems. In 2019, she left the federal government to found a data science company, Sose Intelworks Inc., that partners with industry experts in the medical and financial sectors to leverage statistical modeling, machine learning, and computational linguistics among other techniques to further business growth and impact.
Rose is also passionate about teaching leadership skills through the outdoors. She is one of a handful of women leading rock-climbing expeditions for the premier outdoor education school NOLS, as well as an aspirant climbing guide through the American Mountain Guide Association.
Rose joined the CRD board to advance its mission to bring cutting-edge treatments to patients with rare diseases today. We have reached the point where the technology is there or nearly there to create life saving treatments for previously intractable diseases. But it will take organizations like CRD to push the needle forward through collaboration with researchers and industry partners, strategic management during the treatment lifecycle, and relentlessly pursuing the goal to save lives. Rose was introduced to CRD after learning that her husband, Jeff, was diagnosed with SCA3, a rare neurodegenerative disease. Rose lives in Boulder, Colorado with Jeff and their cat.