Names & Notes
New ABI board members elected
DES MOINES — Josh Wilford, of Emerson/Fisher in Marshalltown, was elected to the board of the Association of Business and Industry Board of Directors for the 2019 fiscal year, which begins July 1.
The ABI Executive Committee is comprised of business leaders from across Iowa who provide leadership and direction for the ABI Board of Directors and the organization as a whole.
RARE Champion of Hope — Advocacy award to VanHoutans
Through the RARE Champion of Hope Awards, true champions for rare disease are honored and recognized. More than 100 advocates were nominated by their respective communities as RARE Champions of Hope. From grassroots fundraising to incredible advancements in medicine, there was no shortage of accomplished candidates.
Tracy and Jennifer VanHoutan founded Noah’s Hope to raise awareness and funds for Batten disease research as two of their four children were diagnosed with CLN2 Batten Disease. They became involved in advocating for all rare diseases within various agencies and with members of Congress. They both work with many other patient advocates to advance legislation and have been panelists at a Rare Disease Congressional Caucus hearing.
Noah’s Hope began co-funding work at Rutgers University as well as provided materials for the creation of two animal models of CLN2 disease. In 2017, the FDA approved the first therapy for Batten disease. While their children did not get the benefits of medical therapy, the VanHoutans continue their efforts with Noah’s Hope-Hope 4 Bridget in hopes of delivering new treatments to those affected by CLN2 Batten disease.
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