Spotlight: Judith LZ Weisenberg, MD
In honor of our 10th anniversary, here is a spotlight on Judith L.Z. Weisenberg, MD. She is an Associate Professor of Neurology in the Division of Pediatric Neurology at Washington University, and Epilepsy Section Co-Director with Robin Ryther, MD, PhD of Washington University Rett Spectrum…
Read MoreSpotlight: Wenlin Liao, PhD
In honor of our 10th anniversary, we are presenting this spotlight on Wenlin Liao, PhD, who is an Associate Professor at National Cheng-Chi University, Taipei, Taiwan. Where do you work? National Cheng-Chi University, Taipei, Taiwan. Tell us about your research. (Assume we know nothing!) I…
Read MoreSpotlight: Elia M. Pestana Knight, MD
In honor of our 10th anniversary, here is a spotlight on Dr. Elia M. Pestana Knight. She is a pediatric epileptologist in the Pediatric Epilepsy Section, Epilepsy Center, Cleveland Clinic Neurological Institute, Cleveland, Ohio. She is also an Assistant Professor of Medicine at the Cleveland…
Read MoreSpotlight: Tim Benke, MD, PhD
In honor of our 10th anniversary, here is a spotlight on Dr. Tim Benke who is Ponzio Family Chair in Neurology Research and Professor of Pediatrics, Pharmacology, Neurology, and Otolaryngology at University of Colorado School of Medicine. Where do you work? University of Colorado School…
Read MoreSpotlight: Eric Marsh, MD, PhD
In honor of our 10th anniversary, here is a spotlight on Eric Marsh, MD, PhD. Dr. Marsh is an Associate Professor of Neurology and Pediatrics at Children’s Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania. Where do you work? Children’s…
Read MoreSpotlight: Orrin Devinsky, MD
In honor of our 10th anniversary, here is a spotlight on Orrin Devinsky, MD, who is Director of the NYU Epilepsy Center and Professor of Neurology, Neuroscience & Psychiatry at NYU Langone School of Medicine. Where do you work? I work at NYU Langone Health…
Read MoreCDKL5 Spotlight on Isabella
Meet Isabella our CDKL5 September Spotlight! Mom, Alexia, shares her story! This is Isabella, our resilient happy three-year-old. We didn’t receive our CDKL5 diagnosis until she was around one. Up until then we were trying to find answers for the seizures she was having. We…
Read MoreSpotlight: Alysson Renato Muotri, PhD
In honor of our 10th anniversary, we thought it would be fun to do a spotlight on Alysson R. Muotri, PhD, who was one of the original researchers who worked on the iPS cell lines for CDKL5. Dr. Muotri is Professor of Pediatrics and Cellular…
Read MoreCDKL5 Spotlight on Noah
It’s time for another CDKL5 Spotlight! Meet Noah from Tennessee! Mom, Jennifer, shares about her precious boy! Noah was a huge surprise to our family. We thought we were done after my daughter, Addison, was born due to severe complications I had after her birth.…
Read MoreHow PFDD Helps Families Affected by CDKL5 Deficiency
PFDD Meeting for CDKL5 Community On November 1, 2019, IFCR and the LouLou foundation will co-sponsor a Patient-Focused Drug Development (PFDD) meeting for CDKL5 Deficiency Disorder. This meeting is a very rare opportunity to convene patients, regulators, researchers, developers, and health-care professionals. PFDD meetings are a…
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