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This week, after cycling 1,000 miles from Miami to Chapel Hill, Kellen Hassell presented a check for $15,000 to the Carolina Institute for Developmental Disabilities (CIDD) earmarked for research on Angelman syndrome, a severe neurodevelopmental condition that occurs in about one in 15,000 live births.

He chose Chapel Hill because of UNC-Chapel Hill’s dedication to patients with Angelman syndrome and research aimed at creating better treatments.

“This is where there is not only one of the very first interdisciplinary health clinics designed to diagnose and treat Angelman syndrome and support parents and families who have a loved-one with the condition,” Hassell said on his fundraising page, “but also where some of the most promising cure research is being conducted by Dr. Ben Philpot and his team.”

The total sum raised thus far exceeds $18,575.

Hassell is clinical assistant professor at the Nicole Wertheim College of Nursing and Health Services at Florida International University in Miami. He and his wife have three young children. The middle child, Luc, who is four years old, has Angelman syndrome. He has severe intellectual disabilities, trouble sleeping, and other developmental problems. He may never understand what his father did to raise awareness and money for research.

Hassell, no stranger to raising money for causes, handed an oversized check to UNC researchers at a ceremony following his journey.  Mark Zylka, PhD, member of the CIDD and director of the UNC Neuroscience Center, Philpot who serves as associate director, and Joseph Piven, director of the CIDD, expressed their gratitude for this generous contribution.

“Dr. Hassell’s cycling trek was truly amazing and inspiring, and it helps to keep us all focused on the goal of developing new treatments for children and adults with Angelman syndrome,” Zylka said.

To read more about Hassell’s efforts and to watch him speak about his son and the potential for research breakthroughs, click here or read the News & Observer story here.

Read more about Philpot’s latest work here and check his lab’s site here.

Published August 17, 2016.