President & Founder

Anne has a background in the fields of dispute consulting, damage analysis and economic based research and modeling. She is a graduate of Boston University and Johns Hopkins University, with degrees in International Economics and Social Change & Development, and a graduate thesis on Human Rights. When her son was born with profound developmental delays, Anne left her career to gain expertise in Physical Therapy, Occupational Therapy, Speech Therapy and Behavioral Therapy to help her son to achieve developmental milestones. After a diagnosis of autism and ten years of intense therapeutic interventions, genetic testing showed a mutation on the MEF2C gene. Anne established the US MEF2C Foundation to accelerate research and development to find treatments and a cure for our patients. She strongly believes that through collaborative efforts we can improve the lives of our patients and their families, Anne is honored to be an advocate for this special community.

Board Member

Dean for Therapeutic Discovery and Chief of the Division of Liver Diseases at the Icahn School of Medicine at Mount Sinai.

Dr. Friedman’s appointment in 2021 as Dean for Therapeutic Discovery at Mount Sinai recognizes his unique strengths in translating basic science into clinically meaningful advances, and his investigative work in liver disease has been instrumental in fueling the tremendous growth in emerging diagnostics and therapeutics for hepatic fibrosis. He is widely respected among commercial partners for his broad expertise from basic science to clinical trials, and currently consults for over 40 companies in the liver disease space.

Board Member

Chen Familiy Associate Professor at Duke Univeristy

Dr. Bissig received his MD and PhD from the University of Bern School of Medicine & Natural Science, Bern, Switzerland. After completing his internal medicine fellowship, he moved to the US as a postdoctoral fellow in cancer biology and gene therapy at the Salk Institute for Biological Studies, La Jolla, California. During his education, he has maintained his vision of interdisciplinary research to improve human health. Dr. Bissig has continued to pursue his passion through his time at the Salk Institute and Baylor College of Medicine, where he started his own laboratory; and currently at Duke University where he creates therapeutic alternatives for children with metabolic diseases.

Treasurer

Dalila is Head of Finance Business Risk and Control at CLS Group, responsible for implementing and improving financial processes. Prior she served as Director of Financial Planning and Control at CLS Group. Before joining CLS, Dalila worked as a Financial Controller at Barclays Investment Bank, responsible for budget planning, reporting, and financial analysis. Dalila also served as Director of Finance at Mastercard and holds an MBA from IAE Paris - Sorbonne Business School, an MBA in Finance from Iona University, and a BA in International Law from the University of Paris Sorbonne. She also holds a Diplome d'Etudes Universitaires General in Law from Universite Versailles St Quentin and is a Certified Treasury Professional and a member of the Association for Financial Professionals, with a focus on Treasury Management.

Community Engagement Manager

Tushar Puthran is a Software Solution Architect at Virtus Investment Partners, with over a decade of experience in software solutions for investment banking and emerging technologies, specializing in delivering high-quality solutions to major financial institutions. He holds a Bachelor’s Degree in Engineering,Electronics and Communications and a Master’s degree in Financial Analysis from Rutger’s Business School.  Tushar is the father of Myra, one of our MEF2C Super Heros.

Community Resource Advisor

Laura Durns is a special education teacher at Central Bucks School District. She holds a Bachelor’s Degree in Elementary Education and a Master’s Degree in Special Education. Laura also served as the Vice President of the North Penn Parents Special Education Alliance (NPPSEA). NPPSEA was created to promote community knowledge and awareness of individuals with disabilities by providing educational and networking opportunities for parents, professionals and community members vested in individuals with disabilities. Laura is the mother of Tristan, one of our MEF2C Super Heros, who has participated in several Triathalons and is a swimmer for the Special Olympics.

Marketing Strategist

Originally from Indiana, Rachel graduated with a BA from Purdue University before moving to Chicago to enter the commercial property and casualty insurance industry. With over 25 years of experience in insurance, she is also a dedicated mom to two children. Rachel and her husband received their son’s initial diagnosis, 5q14.3 Deletion Syndrome, just after Vinny’s first birthday in 2011. They soon learned that his deletion of MEF2C is specifically recognized as the main cause of his symptoms. Vinny has been on a steady diet of multiple therapies since he was an infant. He continues to rise to challenges and learn everyday skills. Vinny is a sweet, easy-going teen with a very supportive, spunky younger sister. Rachel cherishes spending time with her family and friends and finds karate to be a great outlet. She is also excited to work with the US MEF2C Foundation to help connect families and increase awareness of MEF2C.

Community Advocacy Support

Kelly is the mother of three girls. Her youngest daughter Teegan is diagnosed with a MEF2C mutation. Kelly has a Bachelor’s Degree in Child and Family Studies; and for over 10 years, has worked in the school district with many different children on development. Kelly is currently a stay-at-home mom caring for her daughters and bringing Teegan to many appointments and therapies. She is excited to be a part of the team and looks forward to advancing research towards a treatment for MEF2C related disorders.

Rare Disease Advocacy Rotation, University of Pennsylvania

Caitlin Findlay, originally from Lancaster, Pennsylvania, recently returned from Southern California to attend UPenn. After earning a BA in Public Communications from American University in 2006, she shifted to genetic counseling following her son’s rare diagnosis. Caitlin studied genetics and biochemistry and shadowed genetic counselors for hands-on experience. With an interest in precision medicine, deep understanding of genetic conditions and a commitment to supporting affected families, she is eager to bring her insights to UPenn’s program as she transitions from caregiver to healthcare professional. Caitlin enjoys family biking, live music with her son, and cheering on her daughter at soccer games.

Scientific Advisory Board

Chief of the Department of Pediatrics, Boston Children’s Hospital, Mary Ellen Avery Professor at Harvard Medical School and President of the Children’s Hospital Pediatric Associates.

Dr. Chung is a clinical and molecular geneticist and directs research programs in human genetics of autism, neurodevelopmental disorders, birth defects including congenital diaphragmatic hernia, congenital heart disease, and esophageal atresia, newborn screening, pulmonary hypertension, obesity, and diabetes. She is a national leader in the ethical, legal, and social implications of genomics. She was the recipient of the NY Academy of Medicine Medal for Distinguished Contributions in Biomedical Science, the Rare Impact Award from the National Organization of Rare Disorders, and is a member of the National Academy of Medicine and the American Academy of Physicians. Dr. Chung received her B.A. in biochemistry from Cornell University, her M.D. from Cornell University Medical College, and her Ph.D. from The Rockefeller University in genetics.

Scientific Advisory Board

Nathan Marsh Pusey Professor of Neurobiology at Harvard University

The Greenberg laboratory has had a longstanding interest in uncovering the complex activity-regulated gene expression program relevant to synapse development and neural circuitry. We are particularly interested in understanding the basis of neurological disorders that arise when these processes have gone awry.

Scientific Advisory Board

University of Pennsylvania Perelman School of Medicine

Jayne Aiken comes from an interdisciplinary background spanning engineering, cell biology, and neuroscience. Her research focuses on unraveling the foundational molecular mechanisms underlying human synapse formation, and how these processes are disrupted in neurological disease. In her Ph.D. thesis at the University of Colorado School of Medicine, Jayne investigated brain malformations and discovered important molecular, cellular, and tissue-level consequences of pathogenic mutations to tubulin genes, which encode the functional subunits of the microtubule cytoskeleton. As a postdoc at UPenn, Jayne extended her exploration of rare neurological disorders to variants in the kinesin motor KIF1A, revealing how distinct classed of KIF1Amutations alter cellular function. Research into MEF2C links Jayne’s mechanistic interests in neuronal morphogenesis and synapse function with her desire to help inform therapeutic strategies for neurodevelopmental disorders such as Autism Spectrum Disorder, Epilepsy, and Schizophrenia.

Scientific Advisory Board

Songjiang Research Institute, Shanghai Jiao Tong University School of Medicine.

Zilong Qui was born in Beijing and grew up in Anhui, China. From 1994-1998, he attended Shanghai Jiao Tong University and graduated with a BS in Biological Sciences. He was a graduate student with Dr. Kan Liao from 1998-2003 at the Shanghai Institute of Biochemistry and Cell Biology, Chinese Academy of Sciences. In his Ph.D. thesis, he focused on the molecular mechanism of adipocyte differentiation. With this molecular biology and cell signalling background, he became eager to explore the field of molecular neuroscience during the last several years as a graduate student and came to Dr. Anirvan Ghosh’s Lab at University of California, San Diego to pursue this dream. His postdoctoral project focuses on activity dependent transcriptional regulation of genes in the rodent cerebral cortex. His investigations have included MEF2C as well as MECP2. See Areas of Study

Scientific Advisory Board

Dr. Kristina (Kristy) Johnson is a physicist, neuroscientist, and engineer who develops new science and technology to augment the health and abilities of individuals with complex neurodevelopmental disorders. Her research focuses on wearable biosensors, longitudinal real-world data collection, and personalized machine learning models to capture and interpret developmental data from individuals with genetic disorders, profound autism, and intellectual disabilities. Dr. Johnson received her Ph.D. from MIT and is currently a Rosamund Stone Zander Translational Neuroscience Center postdoctoral fellow at Boston Children’s Hospital (BCH) and Harvard Medical School. She also holds an M.S. and Honors B.S. in Physics. She is an incoming assistant professor at Northeastern University (Fall 2023), with joint faculty appointments in the College of Engineering (Department of Electrical and Computer Engineering) and the College of Health Sciences (Department of Communication Sciences and Disorders). Dr. Johnson is also the mother of a child with MEF2C Haploinsufficiency Syndrome.

Scientific Advisory Board

CEO Unravel Biosciences

Richard Novak, PhD is a bioengineer and entrepreneur dedicated to solving unanswerable questions through technology innovation. Prior to Unravel Bio, he was a Lead Engineer at the Wyss Institute for Biologically Inspired Engineering at Harvard University where he managed fast-paced programs in drug discovery, advanced disease models, human Organ Chips, and integrated automation and sensor systems. He has over 15 years of experience in microfluidic system development and applications in the therapeutic space. He is a founder and president of the nonprofit Future Scientist and a founder and director of the sample collection automation company Rhinostics Inc.

Scientific Advisory Board

Chief Scientific Officer, Unravel Biosciences

Frederic Vigenault, PhD, is a molecular biologist with a drive to tackle unmet patient needs. Prior to Unravel Bio, his role as Senior Scientist at the Wyss Institute for Biologically Inspired Engineering at Harvard University enabled him to work across teams on multidisciplinary projects, including the initial development of CRISPR gene editing, low-cost diagnostics using synthetic biology, and DNA synthesis and sequencing that led to multiple startup companies. As a scientist at SRI International, he enabled development of systems-level signaling models. He has a background in plant molecular biology.