Leadership

Greg’s first exposure to the horrors of myelin disease was when his uncle lost his battle to AMN in 2001. His brother Mike was diagnosed seven years later and fought the very same illness for most of his adult life. On February 25th, 2020, Greg’s eldest brother Michael lost his battle with AMN.

Greg served as the Program Director for the Myelin Project from 2012 – 2017. In 2015, he started the ALD Family Support Program to support low-income families living with ALD, AMN, and other leukodystrophies. He also worked on the campaign to pass California Assembly Bill 1559 enacting ALD newborn screening in California.

Dr. Josh Bonkowsky is a co-founder of ALD Connect. He is a pediatric neurologist specializing in clinical care and research.  He is a professor of Pediatrics at the University of Utah School of Medicine.

After graduating from Harvard College, he spent one year on a Fulbright Fellowship in Vienna, Austria.  He received his MD and PhD degrees from the University of California, San Diego, and completed residency training at the University of Utah (pediatrics), Children’s Hospital of Boston and University of Utah (pediatric neurology).

A physician-scientist with interests in clinical and bench research, he studies nervous system development and disease. He has been continuously funded by NIH since 2006, including award of the 2012 Director’s New Innovator grant; and his bibliography includes over 90 peer-reviewed articles.

Dr. Bonkowsky is the Division Chief of Pediatric Neurology at Primary Children’s Hospital, and the Director of the Primary Children’s Center for Personalized Medicine. In addition to these duties, he enjoys his more informal roles, such as the summer picnic with taco truck; and, critically, the Annual Cookie Contest.

Since 2006, Dr. Bonkowsky has personally mentored 60 trainees; including 35 women, and 7 under-represented minority trainees.  Together with his wife, a pediatric infectious disease physician, he juggles his personal and professional responsibilities.  In his “spare” time he enjoys camping with his daughter, building a quasi-functional radio telescope with his sons, and trail running.

Dr. Florian Eichler is a co-founder and President of ALD Connect. He is a Professor of Neurology at Massachusetts General Hospital (MGH) and Harvard Medical School. His career has been dedicated to advancing the care and treatment for devastating neurogenetic conditions. Following neurogenetics training at Johns Hopkins with the late Dr. Hugo Moser and residency in pediatric neurology at MGH, he became the Director of the Leukodystrophy Service that cares for patients with an increasing variety of neurogenetic conditions. Dr. Eichler runs a laboratory at MGH that explores the relationship of mutant genes to specific biochemical defects and their contribution to neurodegeneration. In 2015, he became Director of the Center for Rare Neurological Diseases at MGH. The Center aims to eradicate rare disorders of the nervous system by leveraging the power of biological insights towards design and implementation of clinical trials. Dr. Eichler is the Principal Investigator of several NIH-funded studies on neurogenetic disorders as well as a gene therapy trial of adrenoleukodystrophy. For this work, he received the Martin Research Prize from MGH and the Herbert Pardes Clinical Excellence Award from the Clinical Research Forum. Dr. Eichler also serves as Chair of the Rare Disease Think Tank at MGH.

Dr. Ali Fatemi is a co-founder of ALD Connect. He is the Chief Medical Officer at Kennedy Krieger Institute, a pediatric neurologist and the director of the Division of Neurogenetics and the Moser Center for Leukodystrophies, an investigator at the Hugo W. Moser Research Institute at Kennedy Krieger Institute and holds the Blum-Moser Chair for Pediatric Neurology. Dr. Fatemi is also professor of neurology and pediatrics at Johns Hopkins University.

Dr. Stephan Kemp is a Professor at the Amsterdam University Medical Center, the Netherlands. He was trained as a translational researcher at Johns Hopkins University/ Kennedy Krieger Institute, Baltimore, Maryland, USA and obtained his PhD in 1999 at the University of Amsterdam. Dr. Kemp has more >25 years of experience with ALD research and published >90 papers and book chapters on ALD. In 1999, together with Dr. Hugo Moser, he founded the ALD Mutation Database (www.x-ald.nl), which moved to www.adrenoleukodystrophy.info in 2017. He is a member of the scientific board of the European Leukodystrophy Association (ELA) and the United Leukodystrophy Foundation. Dr. Kemp is the project leader of the SCAN study; the pilot for implementing ALD newborn screening in the Netherlands. In 2015, he received the AMC Societal Impact Award (ASIA). His research focuses on lipid metabolism and neurotoxicity.

Dr. Troy Lund is a Professor in the Department of Pediatrics, Division of Blood and Marrow Transplantation and Associate Director of the Leukodystrophy Center at the University of Minnesota. He is an international expert on the use of cell and gene therapy for patients with adrenoleukodystrophy. Dr. Lund oversees one of the largest biorepositories in the world for ALD and other rare diseases. He has several active research projects, focused on improving treatment options and outcomes for boys with ALD at every stage of disease. He has published extensively on various aspects of ALD and made substantial contributions to the field with his work both in the clinic and the laboratory.

Tim is a visionary leader and highly accomplished professional in the financial services industry. As Chairman of Karr Barth Associates, Tim is passionate about helping others achieve greatness and mentoring the next generation of leaders. At Karr Barth, Tim manages more than 350 financial professionals and maintains a growing client practice. The firm serves over 120,000 households and businesses throughout the tri-state area. With assets under management topping $11B, as well as $29B of life insurance in force, they are monikers of integrity when it comes to serving their clients’ needs.

In addition to managing Karr Barth, Tim strives to “make a difference in the lives of others”. Recognized as a business leader within the company and industry, Tim serves on both company and industry-wide boards. He focuses on encouraging and inspiring others to live a life of significance. An alum of St. Joseph’s University, Tim has remained connected to the university as Chairman of the Haub School of Business Board of Visitors. He is also actively engaged as a Board Member of CHOP Oncology and Villa Maria Academy. In 2011, Tim received the prestigious ‘Father of the Year Award’ from the American Diabetes Association.

Tim’s financial career spans more than 30 years. He thrives on being a leader and cultivating a team of dedicated managers and advisors. He seeks to recruit the best talent to serve the clients of Karr Barth. In his practice, Tim uses a comprehensive planning process to help families, corporate executives and business owners reach their financial goals at each life stage. Tim resides in Wayne, PA with his wife, Colleen, and their four children. He was diagnosed with AMN at the age of 37.

Patricia Musolino MD, PhD is a critical care and vascular neurologist with expertise in neurogenetics and vascular neurology. She cares for patients in the Intensive Care Unit, the Emergency Department and the Pediatric Stroke Clinic. Dr. Musolino’s research focuses on understanding how brain inflammation and stroke occurs when patients carry specific genetic mutations. Dr. Musolino is also part of multiple therapeutic clinical trials in stroke and rare disorders.

Kathleen is a co-founder of ALD Connect. She serves on the Board of Directors as Treasurer and General Counsel and is the Chief Operating Officer. Kathleen is a symptomatic woman with ALD and an ALD mom. Over the past eleven years, Kathleen has taken on roles as a patient advocate, industry liaison, developer of programming, and facilitator of many events. Kathleen has served on the FDA’s Cellular, Tissue and Gene Therapies Advisory Committee, the ALD Family Weekend planning committee, the NIH RDCRN CPAG committee, the EveryLife Foundation RDLA, the Alliance of Regenerative Medicine Patient Advocacy Committee, the CPSA Analytics Charitable Foundation, and the ALD Connect Industry Advisory Council.

Dr. Salzman is a co-founder of ALD Connect. She currently leads the Stop ALD Foundation, in addition to serving as CEO of Epicrispr Bio. She has served in various leadership roles in the Pharmaceutical industry, including GSK, Cardiokine, and Adverum. However, her work with ALD is a particular personal passion. The Stop ALD Foundation was established in 2000 when her nephew, Oliver, was diagnosed with ALD, leading to her son and another nephew testing positive. The Foundation led the process to add ALD to the National Recommended Uniform Screening Panel (RUSP) and has championed the development of new therapies to address ALD. Amber also serves on the Boards of Akcea (NASDAQ: AKCA), Dornsife’s School of Public Health, and Lankenau’s Institute for Medical Research.

Dr. Smith-Fine is an Assistant Professor of Neurology and Developmental Medicine, Kennedy Krieger Institute and Johns Hopkins School of Medicine. Dr. Fine is a physician scientist working in the Moser Center for Leukodystrophies. The focus of Dr. Fine’s primary research study is to use advanced MR imaging sequences of the brain and spinal cord in conjunction with quantitative measures of gait and balance obtained with wearable accelerometers to determine the neural substrates of clinical impairment in ALD and LBSL and validate the longitudinal use of wearable technology to identify clinically meaningful quantitative performance measures.

Dr. Keith Van Haren is a co-founder of ALD Connect. He has been dedicated to leukodystrophy care and research for almost 20 years. He is the Director of the ALD & Neuroimmunology Clinics at Stanford Children’s Health. He also oversees a clinical and laboratory research program dedicated to ALD and multiple sclerosis where his team works intensively to develop new scientific insights and improved standards of care for ALD.

Kelly joined ALD Connect as the Executive Director in 2019. Kelly has worked in healthcare administration and with the ALD community for more than 13 years. She has a Master of Healthcare Administration degree from the University of Minnesota.

Felicity joined ALD Connect as a Volunteer in 2020 and was hired as a Project Manager in 2021. In May of 2023, she completed a Ph.D. in Biomedical and Biological Sciences at Cornell University, and in the fall of 2023, she started a Genetic Counseling Masters program at Rutgers University. Felicity values every opportunity she has to learn from the ALD community about the lived experiences of families with ALD.

Patti’s journey with ALD began in 1960 when her younger brother Bobby passed away from the disease at the age of five. Patti’s second brother Richard passed away in 2001 from AMN just ten years after his diagnosis. Her son Michael, fought the very same illness for most of his adult life. On February 25th, 2020, Patti’s eldest son Michael lost his battle with AMN.

Patti served on the Board of Directors of The Myelin Project for over 20 years, and became president of The Myelin Project in 2009. She has helped raise well over a million dollars for ALD and AMN disease research throughout her days with The Myelin Project dating back to the early 90s.

Alex is a co-founder of ALD Connect. He is the Director, Center for Innovation and Biomedical Informatics (CIB) at the NCRI and a Principal Associate in Neurology at Harvard Medical School. The focus of Alex’s work and research is conception, design, development of technology, platforms, infrastructure, and methods for collaborative clinical research and optimization of clinical research in disease-specific networks.

Other aspects of Alex’s research are patient empowerment, developing a system of incentives and supporting technologies to secure collaboration, integration, harmonization and sharing of clinical and research information by all clinical research enterprise participants.