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By Dana Talesnik
Isabella and Julia Flysjo, age 4, are part of a first-in-human gene therapy trial at the Clinical Center for their rare disease.
Photo: Niclas Flysjo
It’s agonizing for parents to watch their children suffer and not know how to help them. When parents learn their child has a rare disease, consumed with grief and fear, they try to navigate the confusing medical lingo for diseases that have limited resources and few, if any, effective treatments.
Two families were among those who shared their rare disease journeys during NIH’s Rare Disease Day virtual event on Mar. 1. In both cases, their babies were born seemingly healthy. Then, around age 2, worrisome symptoms appeared that led these families to seek a medical evaluation.
SwedenJessica-flysjoTracy-dixon-salazarJacob-thompsonNiclas-flysjoDana-talesnikCynthia-tifftSavannah-salazarHampus-flysjoJulia-flysjoClinical-centerTwo-families-grappleAnd cures. and in our lifetime the neurosciences are going to make brews that are going to be exciting and wonderful. we, in the year 2017, we, from our lab, we will be having for the first time a treatment with human trials for als. and we hope in the year 2017 for the first time we will have a nasal vaccine for alzheimer s. so exciting things are coming, and we are motivated. and i want to say the proceeds my proceeds from this book go directly to research and will go directly to finding treatments and cures for these devastating illnesses that affect 50 million people worldwide. ann romney, i know your work on this has inspired a whole lot of people, so thank you for that. also we wanted to thank you for your last book the romney family cookbook. we are proud owners separately of that. the recipes are phenomenal. the meatloaf is the only thing
TimeTreatmentCuresBrewsNeuro-sciencesLifetimeHuman-trialsLabWe2017ThingsProceeds