LILLIAN HOWARD
CAPSTONE
Capstone Project Committee: Natalie Beck, M.S., CGC; Beth Boyea, M.S., CGC; Lauren Doyle, MGC, CGC; Megan Mann, M.S., CGC
Angelman syndrome is a neurodevelopmental disorder characterized by intellectual disability, seizure activity, absence of speech, and gait ataxia. This genetic disorder is often managed by a variety of specialists across many disciplines. It has been suggested that a disease specific interdisciplinary approach is the best way to manage chronic disorders in children. It is on this model of care that this study was focused. There are currently three funded Angelman Syndrome interdisciplinary clinics in the United States based out of the University of North Carolina-Chapel Hill, Massachusetts General Hospital, and Mayo Clinic in Rochester, Minnesota. In 2014, the Angelman Syndrome Foundation committed more than $1.5 million to establish 17 clinics across the country. As these clinics emerge, guidelines to ensure quality patient care are necessary. This study surveyed parents of people with Angelman syndrome to collect both qualitative and quantitative data. This study aimed to measure parent satisfaction with their child’s services, elicit parent experiences with Angelman syndrome interdisciplinary clinics, and evaluate what Angelman syndrome interdisciplinary clinics can do to best address parents’ concerns and desires. Based on the information collected in this study, we present ten recommendations for clinic management. These recommendations have the potential to be used in the establishment and continuation of Angelman Syndrome multidisciplinary clinics throughout the country.
Since Graduation
Shortly after graduating in 2017, Lilli started her current position at the University of Iowa. In this role, Lilli took on the challenge of building the pediatric neurology genetic counselor position from scratch. She enjoys her work with children, primarily focusing on diseases of the central nervous system. Lilli splits her time between this clinic and her work with the Huntington disease population.
Outside of clinic, Lilli enjoys working with learners of all ages, from elementary students to resident physicians. Following her passion for education, she became a student again in 2020, entering a Masters of Higher Education program with a focus in higher education administration. Planning to graduate in 2022, she hopes to use this degree to further her involvement in genetic counseling education.
In the moments between work and school, Lilli is also planning a wedding with her fiancé Greg. Together, they enjoy hiking, board games, craft breweries and providing snuggles to their dog, Hoda (8).