These people have graciously donated their time to this family meeting to provide information to the community in many categories. It is our hope that much of what they present can be taken home, set into practice, and inspire hope. Take a few minutes to get to know our presenters before the meeting.
Listed in Alphabetical Order:
Gene M. Andrasco is currently the Treasurer for the AHCF. Gene joined the ACHF Board of Directors in 2011 and has previously served as the Vice President and Co-Treasurer. Gene volunteers his time to the foundation in honor of his daughter Kiley who was diagnosed with AHC in 2003. Gene lives in Lake Zurich, Illinois, with his wife, Kelly, and two children, Ryan and Kiley.
Ryan Andrasco, older brother of Kiley is an electrical engineer currently living in Iowa. Outside of work, he spends his time playing lacrosse for the Iowa Dogfish and coaching the University of Iowa club team. Other interests include cooking, exercise, and photography. He previously lead sibling sessions at the 2018 and 2021 family meetings.
Alice Belgrade-Moss, MSEd., LCPC, BCBA is a licensed Clinical Professional Counselor and Board Certified Behavior Analyst with over 25 years in the fields of behavior and education. She has served as the behavior analyst for Lake Zurich School District #95 and currently serves as a behavior analyst in Woodland District #50, as well as a consultant to schools and community agencies throughout the Midwest.
She is owner and director of Belgrade Behavior Consulting, LLC a private practice providing home-based behavior coaching and creative, evidence-based interventions for children with special needs and other behavioral challenges. She founded The Potty People, a group dedicated to potty training children with special needs. Alice presents nationally on topics related to children with a variety of challenges, including Autism, Down Syndrome, ADHD, Bipolar Disorder, and other rare neurological disorders. Authored, “Fitting in Everywhere”, “B. A. S. I. S.: Behavior Assessment Screening and Intervention System”, “Toilet Training Every Child”, and “Emma and Me” (A story for siblings of children with Autism).
Kate Byrne joined the Board of Directors in 2020. Her son, Connor, was diagnosed with AHC in 2019 at 8 weeks old. Upon learning of Connor’s diagnosis, Kate and her husband, Tom, immediately decided to dedicate any time they could to increasing awareness and supporting fundraising efforts for the foundation. They live in Indiana with Connor and their young daughter Jane. Kate works in Human Resources for the University of Kentucky and has a passion for promoting AHC awareness through social media and website development. She is also committed to working with resources in the Chicagoland area to plan fundraising opportunities and events to increase rare disease awareness.
Trisha Multhaupt-Buell, MS, LCGC is a Genetic Counselor and Clinical Research Program Manager at Massachusetts General Hospital in the Department of Neurology. She received her undergraduate degree at the University of Michigan and completed her Master of Medical Genetics and genetic counseling training at the University of Cincinnati.
Ms. Multhaupt-Buell provides clinical genetic counseling for patients and their family members in the MGH Dystonia Clinic and MGH Charcot-Marie-Tooth/Hereditary Motor Neuropathy Clinic. Much of her time and energy is dedicated to coordinating multiple human subjects research protocols related to research participants with dystonia-related movement disorders, such as TOR1A (DYT1) and X-linked Dystonia Parkinsonism.
A major focus of her work involves the oversight of Dystonia Partners Research Bank (DPRB) research standard operating procedures, subject enrollment, and data & sample collection. The DPRB provides high-quality cross-sectional and longitudinal phenotypic data and tissue samples to medical researchers and laboratory scientists for movement disorder investigations.
Matthew Campbell PhD FTCD
I am Professor in Genetics and Head of Department at the Smurfit Institute of Genetics in Trinity College Dublin. I’m originally from Dublin and graduated with a degree in Biochemistry from UCD in 2002 and went on to complete a PhD in 2006 at the same institution focused on understanding the role of the blood retina barrier in the degenerating retina. In the same year, I moved to Trinity College and conducted postdoctoral research with Prof Pete Humphries on the role of the blood brain/retina barriers in health and disease. In 2013, I was awarded Science Foundation Ireland’s (SFI) President of Ireland Young Researcher Award (PIYRA) which allowed me to establish my own research group in TCD. Since then, I have received numerous additional awards for my research which focuses on understanding the role of the so-called blood-brain barrier (BBB) and blood retina barrier (BRB) in healthy and diseased states. In 2020 I was awarded one of Europe’s most prestigious awards from the European Research Council (ERC). In the same year I was elected Science Foundation Ireland’s early career researcher of the year. I lead the SFI funded EYE-D programme which is focused on identifying novel therapeutic targets for ocular diseases. I am also a PI in the SFI funded Centre “Future-Neuro”, which is focused on identifying the cause of and developing treatments for neurological conditions. I am founder and Director of the Neurovascular Genetics Unit at TCD and I have over 20 years of research expertise in the area of blood brain and blood retina barrier biology. I sit on the scientific advisory board of the Moorfields Hospital Charity as well as the UK charity Fight for Sight.
Cate Cohen rejoined the AHCF Board of Directors in 2018. She has been involved with the foundation since her son, Asher, now 14, was diagnosed in 2010. Cate currently lives in Los Angeles with her husband Tobe and their two children, Asher and Flynn (9) and is navigating having two older children out of the nest and pursuing their own adventures in colleges back East. Prior to becoming a stay-at-home Mom, Cate enjoyed a career in Brand Marketing, first in the high-tech industry and later on the agency side of the business. She holds a BA in Political Science from the University of New Hampshire and an MBA from Rivier College. She looks forward to increasing awareness of this disease and raising funds to END AHC.
Dr. Suzanne D. DeBrosse, M.D. is a clinical geneticist in the Center for Human Genetics at University Hospitals Cleveland Medical Center, and an Associate Professor of Genetics and Genome Sciences, Pediatrics, and Neurology at Case Western Reserve University in Cleveland, Ohio.
She is a graduate of Case Western Reserve University School of Medicine and completed residencies in Pediatrics and Child Neurology at Rainbow Babies & Children’s Hospital. She completed her residency in Medical Genetics at University Hospitals Cleveland Medical Center. Dr. DeBrosse is board certified in Pediatrics, Neurology with Special Qualification in Child Neurology, and Medical Genetics. She practices clinical genetics with a focus on diseases of the nervous system in children and adults.
Nina Frost is Mom to Annabel (7), and Clara (10), and President, of Hope for Annabel. Nina leads Hope for Annabel’s efforts to initiate, design, and oversee therapy-centric research for AHC. Nina and Simon Frost founded Hope for Annabel in 2018 to help catalyze research for therapies for AHC, and to serve as a research hub for the community. Hope for Annabel works closely with other national AHC organizations, and maintains close ties to researchers in the field. Nina has also led Hope for Annabel’s fundraising efforts since 2018. Between 2018 and 2020, Nina raised over a million dollars for Hope for Annabel, primarily from a single gala fundraiser in 2019. Nina also led Hope for Annabel’s successful grant application for the $2 million Chan Zuckerberg Initiative award in 2022. Nina’s prior professional experience was in management consulting. Nina and Simon met at Cambridge University, where they were graduate students together. Nina now works full time on AHC.
Dr. George is a Professor and Chair of the Department of Pharmacology and Director of the Center for Pharmacogenomics at the Northwestern University Feinberg School of Medicine. He has been a pioneer in elucidating the genetics and pathogenesis of disorders of the nervous system caused by the dysfunction of sodium and potassium ion transporters and channels. His laboratory is investigating the fundamental mechanisms responsible for AHC and testing new therapeutic strategies using human AHC neurons.
Bill Gerber – Webinar Master joined the Board of Directors in 2011. He joined the pursuit of treatment and a cure for AHC when his son Sean was diagnosed with AHC in 2004. He is actively involved in fundraising and awareness on behalf of the foundation, including aligning his company’s philanthropic mission and corporate social responsibility initiatives to support the AHC Foundation efforts. Bill lives in Hartford, CT with his ex-wife Olga and three children, Sean 20, Shelby 17, and Isaac 15. He is also the co-founder of AccountingDepartment.com, an 18-year-old company providing entire virtual bookkeeping, controller, and advisory services to support scaling and growth-focused businesses nationwide.
Lauren Kronisch MS RD LD has been a pediatric ketogenic dietitian for eight years. She also has three years’ experience working with pediatric patient who have eosinophilic esophagitis (EoE), food protein-inducted enterocolitis (FPIES), and food allergies. She is currently a ketogenic dietitian for Potter Dietitian Consulting and is the Clinical Dietitian Coordinator for the Ketogenic Diet Program at a top ten children’s hospital in Houston, Texas. Lauren earned her MS in Clinical Nutrition from Rutgers University’s School of Health Professions in NJ, where she also completed her dietetic internship and DPD certification, and earned a BA in History from the University of Michigan in Ann Arbor, MI. Lauren had a previous career working in PR and non-profit program management for foster care children and English language learners
Trudy Marsh Grable is actively involved in The Learning Community as a Credentialed Person Centered Thinking (PCT) Trainer. She utilizes the PCT tools in all aspects of her career and life. She brings 38 years of lived experience as the parent of an adult daughter who uses disability services. Trudy’s history includes an award-winning, 30-year career at Parents Helping Parents (PHP), where she held various leadership positions. As Executive Director of Journey of Choice, a parent-directed supported living agency for fourteen years, she managed the SLS agency and educated other families interested in parent-directed services.
Josh Marszalek joined the AHCF board of directors in 2013, has served as Secretary and Vice President, and currently serves as President of the board. Josh and his wife, Laura, live in Connersville, Indiana, and have two children; Levi and Kathryn. Kathryn was diagnosed with AHC in February 2012, and the Marszaleks joined the list of families committed to helping other families and funding research to cure AHC. Josh is a licensed architect and owns his architecture practice in Indiana. Along with his service to the AHC community, Josh is the president of Levi’s swim club and is involved with Scouting in his region as a Troop Committee Member and Merit Badge Counselor. A passionate parishioner at St. Gabriel Catholic Church, Josh finds joy in lifting up those around him to become beacons in their communities.
Myra Medina PT, DPT has over 20 years of clinical experience serving babies, children, and adolescents across a wide range of neurological and developmental disabilities. She has worked in early intervention, home based and outpatient pediatric clinics, with the last 18 years at California Children’s Services in the Medical Therapy Program.
Dr Natalia Morsci is a molecular geneticist and independent research consultant. Her academic training includes a Master’s degree in Animal Science from University of Missouri, a PhD in Cellular and Molecular Biology from the University of Wisconsin-Madison and postdoctoral research fellowships at the National Institute of Neurological Disorders and Stroke (NINDS, NIH) and Rutgers University. Natalia’s “hands-on” laboratory research involved genetically manipulating cells and animals in order to understand the cause and mechanism of neuronal dysfunction.
Natalia is a member of the board of directors at Cure AHC and serves as the Chief Scientific Officer for Hope for Annabel Foundation. Her involvement with the AHC patient community started in 2017 and includes patient education, research strategy development, transgenic vector design, mediation of communications and collaborations with academic scientists and commercial research organizations, and the development, review, and negotiation of research proposals.
Laurie Ozelius PhD is an Associate Professor of Neurology at Harvard Medical School, and Associate Neuroscientist in Neurology at Massachusetts General Hospital. Dr. Ozelius works to uncover genetic causes for movement disorders, especially dystonia and Parkinson’s disease. In 1997, Ozelius and colleagues identified the first genetic cause for isolated inherited dystonia. Subsequent work uncovered two additional genes for isolated dystonia (THAP1 and GNAL), and a gene for rapid onset dystonia parkinsonism (ATP1A3).
The Ozelius laboratory also played a central role in identifying the G2019S LRRK2 gene mutation as a major cause of Parkinson’s disease in the Ashkenazi Jewish population. Dr. Ozelius collaborates with movement disorder clinicians worldwide to collect and characterize patients and families with various inherited dystonias and other movement disorders. Her work is helping to clarify the underlying mechanisms and basic pathophysiology of dystonias and PD, providing a foundation for better diagnosis and effective treatments.
Nutan Sharma MD, PhD is the Associate Professor of Neurology at Massachusetts General Hospital, Harvard Medical School
Her Area of Expertise is Movement Disorders in Neurology, with a focus on Dystonia. She is the Director of the Mass General Brigham Dystonia Center, providing comprehensive evaluation and care to children and adults with all forms of dystonia. Conduct clinical and translational research in dystonia in collaboration with geneticists to identify causative genes, cell biologists to understand the affected intracellular pathways, and imaging experts to identify the affected networks within the brain.
Her work going forward –“ I have established a highly specialized dystonia center that provides clinical care, serves as a gateway for translational research, and continues to mentor multiple early-career movement disorder neurologists in dystonia research, diagnosis, and medical treatment. I am now focused on expanding and diversifying our research portfolio. This includes continuing to work with geneticists, cell biologists, and brain imaging experts. The young faculty members whom I mentor are expanding our work to include understanding barriers to receiving care and establishing quantitative motor assessments in dystonia.
Dr Kenneth Silver, M.D., is a pediatric neurologist at Shriners Children’s Chicago and co-director of the muscular dystrophy MDA-affiliated clinic at the Shriners Children’s Chicago. He is board certified in neurology and pediatric neurology from the American Board of Psychiatry and Neurology, Inc. As a pediatric neurologist, he provides care for patients and investigates diseases of the nervous system, which include the brain, spinal cord, and muscles.
Dr. Silver was a previous clinical associate at the University of Chicago and past program director for pediatric neurology training at the University of Chicago where he helped to train the next generation of pediatric neurologists. Dr. Silver was also an associate professor at McGill University in Canada and previously worked at Shriners Children’s Canada. Areas of interest include treating spasticity in children with cerebral palsy, neuromuscular disorders, neurogenetics, and movement disorders. Dr. Silver has had for many years a research and clinical interest in Alternating Hemiplegia of Childhood and is the Founder of the Ken Silver Distinguished Service Award.
Eloise Theisen, MSN, NP, AGPCNP-BC is a board-certified Adult Geriatric Nurse Practitioner specializing in cannabis therapy. For over 22 years, Eloise has worked primarily with cancer, dementia and chronic pain patients. In the last 9 years, Eloise has focused her efforts on cannabinoid therapies.
Eloise has worked with over 8000 patients to help them effectively treat age-related and chronic illness with cannabis.
Eloise is a co-founder and the Chief Executive Officer of Radicle Health and Radicle Health Clinician Network. She currently serves Chief Nursing Officer and President of Leaf411 where she oversees the Leaf Nurse Network
Eloise was one of the first healthcare professionals to bring a clinical dosing regimen to the cannabis space. She is the past president of the American Cannabis Nurses Association, past interim director for the Medical Cannabis Certificate Program at Pacific College Health and Science where she co-developed the certificate and Master’s program for healthcare professionals and cannabis industry professionals.
In 2019, Eloise co-authored Pain Free with CBD: Everything You Need to Know to Safely and Effectively Use Cannabidiol with Alice O’Leary Randall. She also contributed a chapter in Dr. Carey Clark’s Cannabis Handbook for Nurses.
Eloise currently works as an APP at Stanford Health Care in Palliative Medicine.
Dr. Sho Yano MD PhD is a pediatric neurologist and medical geneticist who is doing research to understand why people with different genetic changes in ATP1A3 can have different symptoms. He completed his MD, PhD (in molecular genetics and cell biology), and child neurology residency training at the University of Chicago, then moved to the US National Institutes of Health for medical genetics fellowship. He is board-certified in pediatrics, child neurology, and medical genetics.
Currently, Dr Yano is setting up a new research lab in Chicago, where he will continue a collaborative research project on ATP1A3 with Dr Miguel Holmgren at the National Institutes of Health. They do biophysical experiments to look for differences between variants (genetic changes) in ATP1A3 that cause AHC and other ATP1A3-related disorders. For example, they measure how these variants affect electrical currents generated by ATP1A3 proteins. One finding from this project is that some people with symptoms that seem different from AHC, such as leg spasticity, actually also have ATP1A3-related disorders. In the future, their research group hopes to use these results to search for new AHC treatments and to find ways to measure whether new treatments work.