Brian Denger is the father of two sons who are living with Duchenne. He is very involved with PPMD in the effort to educate and help families living with Duchenne.
Vacations and summer are synonymous for many families. When people think of vacations, what often comes to mind is travel to a tourist destination, visiting distant relatives, camping or other typical activities. Aside from a college student looking at career prospects, I can’t think of anyone who makes plans to visit a research facility during their family vacation. That is what my family and I have been doing for the past five years. In fact, we travel several hours to the heart of one of Maine’s most loved recreational and scenic places bypassing the parks and shopping, heading straight to a research laboratory.
What started as a chance to learn what research was being done at the Jackson Laboratory several years ago turned into a trip that is the highlight of my summer. The Jax or the Lab, as it is affectionately called by the scientists and staff, use mice as models to understand disease pathology as well as conducts research hoping to develop therapies for many human diseases and disorders. I heard about the Lab’s work at a Paul Wellstone Muscular Dystrophy Center of Excellence meeting as part of a discussion concerning the mdx and other mouse models used for Duchenne muscular dystrophy research. Planning that summer’s vacation, I got the idea of touring the lab and learning more about their research. As fate would have it, their tours were booked, yet the woman I spoke with suggested my family meet with scientists who were involved in muscular dystrophy research. Her offer sounded better, so I scheduled what would be our first meeting at the Lab.
My wife Alice and I invited another parent of a young boy with Duchenne muscular dystrophy who was also staying nearby to join us. That first visit began with a brief tour and a discussion of the history of the lab and included an hour to meet with several scientists. We met with scientists Greg Cox, PhD, Cat Lutz, PhD and other members of their team and talked for almost three hours. I realize Alice and the boys were bored, but the conversation was exciting and I learned a lot. This summer meeting has now become a family tradition.
Each year our tours are slightly different and other scientists may join us, yet we always see Greg and Cat. Last year the daughter of a family friend also came due to her interest in the Lab’s Summer Student Program. A member of the staff took her to speak with other scientists and technicians to discuss the program which I’m sure helped her acceptance into this year’s program. Our sons Matthew and Patrick have seen examples of the mice used in experiments and were allowed to hold or pet the mice. It was fun until a mouse bit Patrick’s finger. Well, they are mice.
This summer we invited other parents from Maine whose two young sons were recently diagnosed with Duchenne muscular dystrophy to join us. After our tour and a brief history of the Lab, we met with an Imaging Specialist who showed us examples of the computer tools scientists use in their work. We were shown three dimensional images of neurons from an ALS study, examples of diseased corneas used to track the progression of Glaucoma and neon green mice used in other studies. Even Matthew and Patrick were impressed with the presentation.
Our next meeting was with Greg Cox and Cat Lutz. We’ve become so familiar with Drs. Cox and Lutz, that we start our discussion with an update of our families and then begin talking about research. We talked about how Matthew and Patrick are doing in school and about how our friend’s daughter was doing in the Summer Student Program where she was working on characterizing a mouse that more closely represented the human progression of DMD compared the less affected mdx mouse. We spoke about current research for Duchenne muscular dystrophy, ALS and Spinal Muscular Atrophy related to RNA manipulation and stop codon therapies and the benefits and obstacles faced as well as research that may help people affected by each of these conditions. These scientists are as concerned about how slow research moves, yet they also emphasized the risk if patients endure negative side effects as has happened in the past.
Four years ago I was involved in an effort with another parent of a boy with DMD to secure federal funding for Jackson Lab’s Duchenne muscular dystrophy mouse model program. These efforts, including Parent Project Muscular Dystrophy’s annual Advocacy Conference help leverage money for DMD research. Individually parents often feel ineffective in funding research, yet advocating for your loved one who has DMD is a remarkably effective way to channel federal resources for DMD. Like befriending scientists, making friends with your Members of Congress helps raise awareness and the likelihood of support for federally supported DMD programs.
Alice and I intend to visit the Jackson Laboratory again next year and for as long as we’re welcome to hear first hand of the work being conducted and to build a relationship with people interested in muscular dystrophy research. I know other families have cultivated similar relationships with researchers and physicians involved in Duchenne muscular dystrophy. These relationships should be reciprocal. Families might learn about what work is being done and gain benefit of the researcher’s intimate perspective. Scientists can meet the people who hope to benefit from their work and learn what life with Duchenne muscular dystrophy is really like. While other families may not plan a vacation around these types of visits, I believe these relationships are crucial to ensuring people realize how important their work is to families like yours and mine.
Brian Denger, Collaborative Programs Administrator
Read more PPMD Blogs