Leadership

Greg’s connection to ALD began in the early 1990s when his uncle, Richard Louisell, was diagnosed with AMN; Richard passed away in 2001. Shortly after Richard’s diagnosis, Greg’s brother Mike was also found to carry the ALD mutation and lived with AMN throughout his adult life. Greg’s eldest brother, Michael, passed away from AMN on February 25, 2020.

From 2012 to 2017, Greg served as Program Director for the Myelin Project. In 2015, he established the ALD Family Support Program to assist low-income families affected by ALD, AMN, and other leukodystrophies. He also contributed to the successful passage of California Assembly Bill 1559, which implemented statewide ALD newborn screening. Greg has served on the ALD Connect Board of Directors since 2019 and has helped expand both the Patient and Family Support Program and the Michael Benton Travel Scholarship Program, which provides financial assistance for families who need support traveling to medical appointments and ALD community events.

Professionally, Greg is a Senior Account Executive at CoStar Group, the leading provider of commercial real estate information, analytics, and online marketplaces. He partners with organizations to leverage CoStar’s research and data platforms to support strategic decision-making, market evaluation, site selection, and business development initiatives.

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 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.

Tyler Hall is Co-Founder of Will to Cure ALD, a philanthropic initiative dedicated to accelerating research and developing treatments for Adrenoleukodystrophy (ALD). Inspired by his son’s diagnosis through newborn screening, Tyler launched the foundation in late 2024 and has since helped raise over $2 million for ALD research while building a national network of leading research partners. While his family’s journey brought him to this work, Tyler’s focus is on advancing outcomes for the entire ALD patient community.

Professionally, Tyler works in business development and strategy within the energy sector, where he has led corporate strategy initiatives, evaluated large-scale investments, and managed complex cross-functional projects. He holds both an MBA and a Bachelor’s degree in Engineering from The University of Texas at Austin.

Tyler lives in Dallas, Texas with his wife and their two children.

Dr. Troy Lund is a Professor in the Department of Pediatrics, Division of Blood and Marrow Transplantation and Cellular Therapy, and Associate Director of the Leukodystrophy Center at the University of Minnesota, the largest transplant center for boys with cerebral ALD.

He is a recognized expert in allogeneic bone marrow transplantation (BMT) and gene therapy and has provided clinical care to boys with ALD from around the world.

Dr. Lund is deeply committed to advancing safer and more effective treatments for cerebral ALD. He leads multiple active research efforts aimed at improving outcomes for boys at every stage of disease through an integrated bench-to-bedside approach that spans both clinical care and laboratory investigation. A longstanding focus of his work is biomarker discovery. His current research seeks to identify predictive biomarkers that emerge before changes appear on MRI, with the goal of determining which patients are most at risk for developing cerebral ALD.

In addition, Dr. Lund is investigating the mechanisms underlying transplant efficacy, with a particular emphasis on peroxisome transfer. He is also exploring innovative strategies to enhance brain engraftment following allogeneic BMT or gene therapy, a critical step in which infused cells must cross the blood-brain barrier to halt disease progression. His team is leading efforts to develop therapies that may improve this process and increase overall treatment effectiveness.

Dr. Lund is also pursuing non-transplant treatment approaches for cerebral ALD. This work focuses on therapies designed to reduce neuroinflammation and potentially diminish or eliminate gadolinium enhancement on MRI, offering the possibility of disease control without the need for transplant.

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. Kathleen is a symptomatic woman with ALD and an ALD mom. 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. Molly O. Regelmann is an Attending Physician and Associate Professor of Pediatrics in the Division of Pediatric Endocrinology and Diabetes at the Children’s Hospital at Montefiore Einstein, Albert Einstein College of Medicine. She earned her undergraduate degree from Cornell University and her medical degree from NYU School of Medicine, followed by residency and fellowship training at the Ichan School of Medicine at Mount Sinai. At the Children’s Hospital at Montefiore Einstein, she specializes in adrenal insufficiency and rare adrenal disorders. Dr. Regelmann is an active member of the Pediatric Endocrine Society and has led the efforts to develop screening and care guidelines for boys with adrenoleukodystrophy. Her academic work includes multiple peer-reviewed publications and national presentations on the endocrine aspects of adrenoleukodystrophy.

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.

Jesse Torrey, MA, LPC is a Licensed Professional Counselor, author, and dedicated advocate for families affected by adrenoleukodystrophy (ALD). She is both the mother and primary caregiver of her son, Jack, living post–bone marrow transplant with cerebral ALD, and she is a symptomatic woman with ALD herself — grounding her work in a deeply personal understanding of the challenges and resilience within the ALD community.

Jesse is the author of Smiles and Duct Tape, a memoir and a blog about her family’s journey with ALD, and she continues to amplify patient and caregiver voices through her writing and public speaking. She has been an active contributor to ALD Connect since 2016, including helping establish the Peer Mentor Program and facilitating ongoing support for the community.

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 15 years. She has a Master of Healthcare Administration degree from the University of Minnesota.

Felicity Emerson, PhD, MS, CGC, is the Scientific Director of ALD Connect and has been with the organization since 2020. She is also a Genetic Counselor at Northwell Health in Queens, NY, with a focus on metabolic genetics. Her background is in scientific research, having also earned a PhD in Biomedical and Biological Sciences studying genomics.

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.