Fore the Support
ForeBatten’s mission is to provide funding, support and hope for the Batten community. We work tirelessly to give children with Batten disease the best possible life, to spread awareness of the urgency to fund new treatments, and to help all families affected by Batten disease.
We are working with researchers as they develop multiple therapies to detect, treat and potentially cure Batten disease. Rare diseases like Batten do not receive the same government assistance as other, more prevalent diseases, so we must join together as parents and caring individuals who are not willing to accept the fate of our children.
Who We Are.
We are fighters.
We are strong.
Co-founder & Mom
Karen met David at Auburn University in 1997 and later earned her Bachelor’s of Architecture at the University of Virginia. Karen began her career as an architect where she worked on custom home design projects. After putting her career on hold to raise her twin daughters, she dedicated her time and energy to finding the best programs and services to help Amelia through the diagnosis of Autism and now both Amelia and Makenzie with Batten disease. She maintains a thick medical notebook and is tirelessly fighting to give all Batten Children a chance for a better life.
Co-founder & Dad
As father to Amelia and Makenzie, fighting Batten is David’s #1 mission and goal. He is personally driven to build awareness and to support his family for the journey that lies ahead of them. His nights and weekends are spent playing games and doing yoga with the girls. In his professional career, David is the cofounder of Jackson Kahn Design, where he is living out his dream of designing golf courses. He met Karen at Auburn University in 1997 and graduated with a Bachelor’s of Environmental Design and a Master’s of Landscape Architecture in 2002.
As an aunt to Amelia and Makenzie, Jennifer is dedicated to bringing awareness to Batten disease and helping to raise funds to support therapies and trials. Jennifer has spent over 15 years in corporate marketing leading product teams and doing event planning. She works closely with community organizations to create local fundraising events and looks forward to creating memorable experiences for the girls and the Kahn family. Jennifer has an MBA from Case Western Reserve University Weatherhead School of Management.
Kathryn Niederer is a loving aunt to Amelia & Makenzie. She has worked in the medical field for the past fifteen years as a board-certified Physician Assistant and welcomes the opportunity to interact with researchers who are working on both a treatment and cure for Batten Disease. Kathryn desires to educate individuals on Batten Disease and be a patient advocate for her twin nieces. She obtained her Masters of Medical Science from Emory University and is presently practicing in Richmond, Virginia.
Chief Fundraiser & Proud Papa
Being a grandparent is the greatest gift in the world. Stan is lucky to be proud "Papa" to Amelia and Makenzie. As David’s father, Stan is committed to providing David, Karen and the girls with anything and everything they need to fight Batten disease and provide the best quality of life possible. Whether on the golf course or at the local breakfast café, Stan is committed to spreading the ForeBatten mission and raising as much awareness as possible to fund research that will one day make a huge difference.
Carol Schwimmer is the Foundation Director and a family friend. Karen and Carol became fast friends when they met through a twin mothers group when the girls were 18 months old. Carol and her husband, Cameron, have twin girls the same age as Amelia and Makenzie. In consultation with the Foundation Board, Carol plans, budgets, implements, and evaluates activities of the foundation with the goal of finding treatments and a cure for Batten Disease. Carol’s mission is to compassionately support the Kahns and other Batten families through their Batten disease journey. Previously, Carol spent over 20 years in Retail Merchandising Management and Consumer Packaged Goods Sales where she was responsible for creating and implementing sales strategy and growth plans. Carol holds a Bachelor of Science in Business Administration from the University of Arizona.
David A. Pearce
Executive Vice President of Innovation and Research at Sanford
Dr. Pearce heads the leading lab in Juvenile Batten disease research. He has been researching Juvenile Neuronal Ceroid Lipofuscinosis (Batten disease) since 1997. His research has led to the first clinical trial for Juvenile Batten disease. He has published over 100 research papers on Batten disease. He also oversees a national registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS). He has served on numerous NIH review committees, has organized rare disease workshops for the National Institute for Neurological Disorders and Stroke (NINDS) arm of the National Institutes of Health (NIH) and is currently a member of the executive committee for the International Rare Diseases Research Consortium (IRDiRC).
MD, MPH, PhD
Pediatric Neurology at University of Tennessee Medical Center
Dr. Ramirez trained as a pediatrician in her native Costa Rica and moved to Rochester, NY in 2000 to pursue a Master in Public Health followed by a PhD in Genetics. She later completed residency training in Child Neurology in 2012. She is one of the small number of clinician scientists who has been involved in basic science and clinical research in the field of Batten Disease. Upon finishing her residency training, she moved to the University of Virginia, where she worked under the mentorship of known epileptologists Jaideep Kapur MBBS, PhD and Howard Goodkin MD, PhD. She recently moved to The University of Tennessee Medical Center, where she continues to care for children with Batten disease and other neurological conditions.
Vice President of Research and Development, M6P Therapeutics
Russell Gotschall brings over 25 years of drug discovery and development to M6P Therapeutics. Prior to joining M6P, Russell was VP of R&D at Amicus Therapeutics, where he managed pre-clinical R&D and helped build a world-class discovery and research organization that maximizing protein engineering and analytics capabilities in the developing of a robust pipeline of novel gene therapy programs in collaboration with the University of Pennsylvania. Russell has had a long career in the clinical and biopharmaceutical industry utilizing his glycobiology expertise to support the development of analytical assays to understand pediatric pharmacology and to support drug development of advanced therapeutics for rare diseases. His experience spans multiple indications including lysosomal storage diseases, cardiovascular, mineral metabolism disorders and chronic kidney disease. Russell is a graduate of Wichita State University with a Master Degree in Biology with an emphasis in glycobiology.
Chief Operating Officer, ProMIS™ Neurosciences, Inc.
Gavin has more than 30 years of biopharmaceutical industry experience with deep experience in developing therapeutics for rare diseases. Most recently he led the development of EXONDYS 51 for the treatment of Duchenne muscular dystrophy (DMD). His rare disease expertise and patient centric focus came from twenty-years with Genzyme, where he led the global development of therapeutics for Mucopolysaccharidosis type I (MPS I), Pompe and Gaucher
Michael C. Kruer
Pediatric Neurologist and Developmental Pediatrician at Phoenix Children’s Hospital
Dr. Kruer is a pediatric neurologist and developmental pediatrician at Phoenix Children’s Hospital, where he serves as director of the Cerebral Palsy & Pediatric Movement Disorders Program. He is associate professor of Child Health, Cellular & Molecular Medicine, Genetics, and Neurology at the University of Arizona College of Medicine Phoenix. Michael’s clinical and research work focuses on improving the health and quality of life of children with neurodevelopmental and neurodegenerative disorders. Dr. Kruer is a physician-scientist, treating children with neurologic and genetic disorders in the hospital and clinic while working to understand the neurobiological basis of disease in the lab. Dr. Kruer’s research team is dedicated to understanding how genetic mutations lead to cerebral palsy, movement disorders, and rare diseases. His talented lab members include computational scientists, molecular and cellular biologists, neuroscientists, physicians, and clinical researchers working toward the common goal of deciphering the molecular mechanisms that lead to childhood neurological disease in order to improve both diagnosis and treatment. Michael’s research has been supported by the American Academy of Cerebral Palsy & Developmental Medicine, Dystonia Medical Research Foundation, Child Neurology Foundation, and the US National Institutes of Health, among others. He is a past recipient of a Clinical Scientist Development Award from the Doris Duke Foundation and the Shields Award from the Child Neurology Foundation. Dr. Kruer is chair of the International Cerebral Palsy Genomics Consortium, an international collaborative effort that uses cutting-edge genomic findings as a window into the causes of cerebral palsy. He is delighted to be a part of the scientific advisory board of ForeBatten.