Tracy VanHoutan

Two of Tracy’s four children were diagnosed with CLN2 Batten Disease in 2009 after a 16 month long diagnostic odyssey.  CLN2 Batten disease is a universally fatal, neurodegenerative lysosomal storage disease which until April of 2017 had no approved treatment or cure.  Soon after Noah and Laine’s diagnoses, Tracy and his wife Jennifer founded Noah’s Hope to raise awareness and funds for Batten disease research.  Partnering with the national patient advocacy group, the Batten Disease Support & Research Assn (BDSRA), Noah’s Hope began co-funding research on multiple fronts, including work at Rutgers University working on ERT for CLN2 Batten.

Tracy also became involved with advocating for all rare diseases within various agencies and with members of Congress. Tracy has spoken before the FDA on multiple occasions, been invited as a panelist for cell based therapies at the NHLBI within the NIH, and has been a featured panelist at a Rare Disease Congressional Caucus hearing on Capitol Hill.  Over the years Tracy & Jennifer have worked with many other patient advocates to advance legislation including the 2012 FDASIA bill and the 2016 21^st Century Cures Act.

On April 27 of 2017 the FDA approved the first ever therapy for any form of Batten disease. The VanHoutan’s son Noah sadly passed away on March 26, 2016 and their daughter Laine passed away on March 20, 2018.  Tracy & Jennifer continue their efforts with Noah’s Hope in hopes of delivering new treatments to children affected by CLN2 Batten disease.