Jennifer and Tracy VanHoutan lost two children in less than two years to CLN2 Batten disease, a rare, genetic, neurodegenerative condition that slowly robs children of their abilities before taking their lives. The VanHoutans founded Noah’s Hope to create awareness, raise money to fund research, and eliminate policy barriers to bringing therapies to patients. Despite their loss, they continue to advocate and push for treatments. At this year’s Global Genes Rare Patient Advocacy Summit in San Diego, the two were honored with a 2019 RARE Champion of Hope Award for their advocacy work. We spoke to the VanHoutans about CLN2 Batten disease, their advocacy work, and their ability to fight on after the loss they suffered. CLN2Batten diseasepatient advocacy

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