In 2009 Bridget Kennicott was diagnosed with Batten disease — a rare genetic disorder that causes premature death around age 12. Her strong fight against this neurodegenerative disease though inspired the creation of Harmony 4 Hope, an organization that uses charitable concert events to fuel scientific discoveries in rare disorders like Bridget’s.
In recognition of the 10th Annual World Rare Disease Day, Harmony 4 Hope gifted $5,000 to the Batten disease research efforts of Kalipada Pahan, PhD, professor of neurological sciences, biochemistry and pharmacology and Floyd A. Davis, MD, Endowed Chair in Neurology at Rush — to whom Bridget also contributed her cells for research before she passed away this February. Through concert benefits and other fundraising efforts, the organization has now directed $15,000 to Rush’s rare disorder research since 2013.
Harmony 4 Hope also hosted their latest Rare Storytellers event at Rush, during which personal stories of rare diseases were shared to educate and inspire students as they prepare for careers in medicine. Amplifying the voices of the 350,000,000 people worldwide affected by rare diseases, the storytelling series runs biannually at Rush and Northwestern.
(Pictured from left to right) Pamela Self, Founder of PSLA, Dr. Kalipada Pahan, The Floyd A. Davis, M.D., Endowed Chair in Neurology, Rush University Medical Center, Kerry Morgan Hughes, Harmony 4 Hope, Founder, Jenna Swan, Retrophin Patient Advocacy and Michael Gralinski, CorDynamics, Founder.