Welcoming Lindsey – a rare opportunity!

The University of Notre Dame’s Patient Advocacy Initiative provides a comprehensive programming that advances training, outreach and research to better serve the rare disease community and next generation of advocates. The program aids curriculum development and experiential learning opportunities and offers students a unique opportunity to work directly with a rare disease nonprofit to navigate challenges unique to the rare disease community.

As members of the Chan Zuckerberg Initiative Rare As One Network, the GLUT1 Deficiency Foundation was given the opportunity to apply to host an intern from this wonderful program at Notre Dame. We were delighted to learn that we had been accepted to the program, and we’ve been equally delighted to get to know Lindsey, who will be spending some time with us this summer, helping at the Research Workshop we’ll host in July and assisting with some specific research-related projects.

We’d like to introduce Lindsey to the community and thank her for her interest in helping patients and families.

My name is Lindsey Hermann and I am currently a rising Senior at the University of Notre Dame! I am majoring in Biology with minors in Science & Patient Advocacy, Chemistry, and History. I am originally from Philadelphia and when I’m not in school, I love to bake, read, and spend time with my family and friends!

I stumbled across this minor during my freshman year of college. Growing up in Philly, I was always exposed to the world of the Children’s Hospital of Philadelphia (CHOP). I had a family friend living with a rare disease who experienced the Undiagnosed Disease Network and I was fascinated by the care provided by his doctors. The Science & Patient Advocacy minor at Notre Dame provided a unique opportunity to further my knowledge on how to interact with and advocate for individuals living with rare diseases in my undergraduate education!  I am currently applying to medical school and hope to use these skills I have learned when interacting with my future patients. I love reading mystery stories and solving logic problems so this minor was the perfect blend of my passions for science and puzzles!

I was introduced to this program through one of my classes and I leapt at the opportunity! In the minor, I have experience working with the legislative side of advocacy as well as some clinical interactions; however, this summer was filled with scientific research and patient support from a foundation. I was eager to see a new perspective to medicine so I applied!

One of my main goals this summer is to create a tool for physicians and scientists to use in their research! I hope this database is a small step towards clinical trials. I have loved reading case studies and reports from all over the world because it is always a real-life story about patient experiences! Thus far, I have learned so much about GLUT1 Deficiency and am excited to dive deeper!