Fore the Support

ForeBatten’s mission is to fund pioneering research and compassionately support 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 gene 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.

ForeBatten.

Who We Are.

We are fighters.

We are strong.

Board of Directors

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 & Mom

Karen Kahn

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.

Co-founder & Dad

David Kahn

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.

Board Member & Aunt

Jennifer McGinn

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.

Board Member & Aunt

Kathryn Niederer

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).

PhD

David A. Pearce

Executive Vice President of Innovation and Research at Sanford

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.

MD

Michael C. Kruer

Pediatric Neurologist and Developmental Pediatrician at Phoenix Children’s Hospital

Jon Cooper leads the Pediatric Disorders Laboratory (PSDLA) at the Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center and David Geffen School of Medicine, UCLA. He has over 20 years of experience working to understand Batten disease. His lab focuses on where and how different types of cells in the brain are affected, using this information to target experimental therapies to see where they can be most effective. This work is now focusing increasingly on events outside the brain, looking at the spinal cord and peripheral nervous system. He is originally from the UK, and was based at King’s College London until the summer of 2016 when he returned to California, having previously trained at UCSF and Stanford.

PhD

Jonathan D. Cooper

Professor of Pediatrics Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center David Geffen School of Medicine, UCLA

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.

MD, MPH, PhD

Denia Ramirez-Montealegre

Pediatric Neurology at University of Tennessee Medical Center

Scientific Advisors

Facebook Icon Footer_2x.png
Instagram Icon Footer_2x.png

A 501(c)(3) tax-exemption organization

Subscribe to our newsletter

ForeBatten Foundation

7433 E Journey Ln

Scottsdale, AZ 85255