We, Rachael Baker (Assistant Professor of Biochemistry) and Amy Wilstermann (Associate Professor of Biology) founded Rare Disease Research at Calvin University in the Fall of 2016. We are excited about working together, alongside students and colleagues, and using our time and resources to support and engage the Rare Disease Community in Michigan. Read more about our story below.

Reflections by Rachael Baker

I first met Amy when I was still a student at Calvin. She was hired as a professor in the biology department my senior year and I was in the first class she taught at Calvin. When I returned to Calvin as a professor, I was excited to get to reconnect with Amy. We decided to work together as an interdisciplinary research team. Amy could tackle the biology and genetics of our research, I could think about the structures of the proteins we were studying. Working together would allow us to still be productive, but to also share the burden of the work. Once we decided that we wanted to work together, we had to decide what to do. We wanted our project to be something we cared about and that fit well with the mission of Calvin, which is to think deeply, but also act justly and live wholeheartedly. We quickly settled on Rare Diseases. The field is small and can benefit from the multidisciplinary perspective we will bring, and rare diseases represent a neglected area of research, especially when you consider that there are over 7000 known rare diseases and 95% of rare diseases are without an FDA approved treatment or therapy. Those 5% of rare diseases with an FDA-approved treatment still struggle with access due to high costs of the treatments.

As we were entering into the rare disease field, Amy and I spent time researching the rare diseases that we wanted to study to see what information was available. There is not much scientific literature available for many rare diseases, so we found our way to more general rare disease sites like NORD, which primarily provides information for patients and their caregivers. This is where we first learned about Rare Disease Day. We began looking for events near to us that would allow us to connect with other people who were researching rare diseases. We found that Notre Dame has a large rare disease research program and was hosting a rare disease day event. This was last February (2017).

We drove down to South Bend, IN for the rare disease day event. It was a mix of research talks and patient stories. While we went primarily to hear the research talks and connect with other researchers, we left very moved by the stories of the patients that were featured. This was our first insight into the unique challenges that come with a rare disease diagnosis. It started shaping the way we thought about our research. It also made us realize that there were some important messages we wanted our pre-health students and our students who were doing rare disease research to understand. As we left that event, we began looking for similar events in the local Michigan area.

There is an important advocacy event that happens in Lansing every year, but at the time, nothing was scheduled for the west side of MI that was accessible for our students, so we decided we would put something together ourselves. When we first put together the symposium, we were primarily focused on gathering people together to recognize and understand the rare disease journey. As we heard more stories, we realized that while most of the people we meet have different rare diseases, especially when you are focusing on one geographic area, there are many elements that are common to their experience. These include feelings of isolation and loneliness, difficulty with diagnosis and uncertainty about prognosis, and the challenges of working with doctors who have not treated a particular rare disease before.

Now, we have become quite excited about building community and support around the common experiences of being rare. Each person and each disease is unique and rare, but in reality the experience of being rare is more common than you would think. Our vision is for Calvin to become a place to connect and build community around the experience of being rare. While we are excited to begin to contribute to the rare disease community, we are also still learning from community members about their uniquely challenging journeys and how we can support them throughout their journey. We want to continually ask the question: what can we do to support you, both as individuals and as an institution? We are excited to continue to dream about what it could look like to build supportive structure and community in the West Michigan area.

If you are interested in hearing more about this vision or would like to participate, please contact us.