Apr. 25, 2018
Posted by Christina Jensen
Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital of Louisville. Each Friday, Patrick and Jennifer volunteer at the hospital, giving back to those who need it most in their city.
Patrick’s good deeds undoubtedly set him apart as a stand-up citizen and when Jennifer was diagnosed with gastroparesis in 2014, he didn’t think twice about doing everything in his power to fight not only gastroparesis, but all rare diseases. “I’m doing every bit of this for my wife. She helps keep me focused on why I continue my advocacy for rare diseases,” he says.
He began by researching how to establish a non-profit organization that would support families in Louisville. During his research, he was introduced to NORD’s patient organization services, which led him to getting involved with Rare Disease Day® as a way to support families impacted by rare diseases in Louisville. In 2017, Patrick hosted his first Rare Disease Day event alongside his beloved wife.
Through the success of the event, Patrick went on to becoming NORD’s Rare Action Network™ Volunteer State Ambassador for the state of Kentucky. In this role, Patrick has recruited other advocates for the Kentucky Rare Action Network and led the charge in establishing proposed legislation for a Rare Disease Advisory Council in his state. In 2017, Patrick worked tirelessly with state legislators and their staff on the proposed legislation and because of these efforts, the bill passed in both the House and Senate. Though the bill was ultimately vetoed by Governor Matt Bevin, it will likely be reintroduced in 2019.
In addition, Patrick has embarked on local community events in an effort to grow the Kentucky Rare Action Network. As a result of these events, Patrick has tripled the number of Kentucky Rare Action Network members in only five months. His efforts have helped to make more Kentucky residents aware of the greater rare disease community and the services that NORD provides.
“Everything is falling into place,” as Patrick likes to say. He looks forward to contributing to the growth of the Rare Action Network in Kentucky by continuing to have a presence during community events around the state. Together, Patrick and Jennifer also plan on expanding the non-profit organization that they founded together, Jennifer’s GP House.
NORD is honored to present Patrick Dunegan with a 2018 Rare Impact Award.
Join us during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards on May 17!