CCPA Summer Series 2021: University of Pennsylvania Huntington’s Disease Center

By Sarina Smith, ‘23

Funding Source: Gertrude Heller Memorial Grant

This summer, I had the opportunity to intern remotely with Penn’s Huntington’s Disease (HD) Center with the support of the Gertrude Albert Heller Memorial Grant. The Huntington’s Disease Society of America (HDSA) regards Penn’s HD Center as a Center of Excellence, which is a designation HDSA gives to facilities that provide outstanding, comprehensive care to HD patients and their families. HDSA Centers of Excellence are composed of multidisciplinary care teams with expertise in Huntington’s disease. The center’s staff all work together and communicate with one another to provide the best care to patients and their loved ones. Huntington’s disease (HD) is a rare, genetic brain condition that deteriorates a person’s physical, cognitive, and emotional abilities. Symptoms of HD usually begin to develop when a person is in their 30s or 40s, and the condition is often described as resembling a combination of amyotrophic lateral sclerosis (ALS), Parkinson’s disease, and Alzheimer’s disease.

Before the spring semester, I reached out to the center’s nurse coordinator, Jennifer Klapper, who kindly welcomed me to intern with the center this summer and learn more about how their team supports HD patients and their loved ones. Being from an HD family, I had visited the center before the pandemic and gained an appreciation of their work. Recognizing the importance of the services and care that the center provides to the community, I wanted to help support their mission. Also, as a biology major and health studies minor at Haverford, I knew that interning at the center would be a great opportunity for me to learn more about healthcare careers while also supporting other HD families.

Because HD is a rare condition, finding care providers who have experience working with HD patients and their families can be very difficult. I am grateful that my family and others that live near Philadelphia can benefit from the valuable resources that Penn’s HD Center provides, but many families across the country do not have access to these resources. Penn’s HD Center provides HD patients and their families with various resources, including neurological and psychiatric evaluations, genetic testing, physical therapy, and social services, all under one roof.

My main project this summer was to enhance the center’s website and add additional resources to the website for patients, caregivers, and youth. One of my main goals this summer was to develop resources for youth and empower other young people to get involved, receive support, and spread awareness of HD. After completing online training that guided me through the process of editing the center’s website, my first task was to curate a collection of resources to support young people impacted by HD. When I was younger, I was largely unaware of the resources available that support youth, including those provided by the Huntington’s Disease Society of America’s National Youth Alliance (NYA) and Huntington’s Disease Youth Organization (HDYO). It was not until high school that I became aware of these resources and became an advocate in the HD community. It is important that children in HD families are encouraged to reach out and receive support at a young age. Organizations like the NYA and HDYO not only provide education to young people but also foster connections in which young people can learn and receive support from others who share similar experiences.

In addition to adding resources for youth on the website, I also added resources on caregiving, crisis intervention, legal services, and other important topics that sometimes get overlooked when considering ways to support HD patients and their families. After taking Professor Kristin Lindgren’s Critical Disabilities Studies course this past semester (which I highly recommend!) and completing this internship, I learned how important it is that we focus on breaking down societal barriers that impede the lives of those with disabilities, including those who have Huntington’s disease. Conducting research, developing therapies, and providing high-quality medical care to HD patients is critical, but it is equally—if not more—important that we address the ways in which legal, economic, and social structures impact HD families.

Throughout my internship, I also had the wonderful opportunity to speak with many members of the center’s staff over video chat. The center’s team generously offered to meet with me to discuss their work with HD patients, their education paths, and how they chose their careers. As someone considering the healthcare field, it was very helpful to hear from a variety of healthcare professionals and gain insight into each of their roles. I had the opportunity to speak with the center’s nurse, neurologist, physical therapist, occupational therapist, speech pathologist, genetic counselor, and social worker. I am also interested in research, and I enjoyed learning more about how the center’s team conducts research with patients to advance our understanding of Huntington’s disease.

Overall, I am so happy to have had the opportunity to work with Penn’s HD Center this summer and help contribute to their important work. I am very grateful to the center’s team and the Gertrude Albert Heller Family for making this experience possible. Through this self-designed internship, I was able to gain insight into various healthcare careers while also supporting a cause that I am very passionate about. Not only will I use what I learned throughout this experience to guide my future career plans, but I will also use it to support fellow members of the Huntington’s disease community and become a better advocate.