July 9, 2015
by Mark Dunning
I have written about my feelings and my family openly for a number of years. I have no qualms about sharing my deepest fears with people in this Usher syndrome community. But I don’t really like writing about myself. And I really don’t like asking for help. Today I am going to attempt to do both. Hopefully you will understand why.
I'm Mark Dunning. You knew that. But I’m really just Mark Dunning. I’m not Mark Dunning, Chairman of the Usher Syndrome Coalition. I’m not Mark Dunning, blogger. I’m not even Mark Dunning, Bella’s Dad. I’m just some guy named Mark Dunning. I’m another person, just like you.
I'm 47. I recently shaved my beard because it was going gray and started wearing glasses because I’m getting old. I'm lucky to be the father of two wonderful teens, Bella and Jack. I grew up outside of Boston in a pretty average suburb. I went to the University of Vermont where I often partied more than I studied. I am rather tall so I played a lot of basketball growing up. Now I run - and ice my knees. I love animals and sports. I enjoy gardening and landscaping but not lawn mowing. I'm learning to cook and am surprised to find I'm pretty good at it. By day, I am the technology director at an international consulting firm in Boston. I'm a son, a brother, a friend, and I always try to be the best person I can be.
In short, I'm just a regular guy. I’m probably very much like you. What makes me different from the crowd is that, like you, I have someone in my life with Usher Syndrome. For me it's my daughter Bella.
Turns out, Bella's diagnosis has actually become one of the most defining characteristics of my life. For all the negatives associated with Usher Syndrome, Bella and Usher have unexpectedly given my life a higher purpose. It's all been a gift of sorts.
In response to Bella's diagnosis, I started this organization to connect people across the world who are challenged by Usher and to try and put the pieces in place so that there will be a cure in Bella's lifetime.
Me. A regular guy. Someone who is just like all of you.
Granted, it's taken a lot of my time. I've travelled the world in pursuit of this goal, attending conferences and symposiums on topics that are as far away from my marketing degree as you can get. I've learned genetics. Genetics! I've met hundreds of people in my quest to cure this syndrome. I've had the honor of befriending incredibly strong people who live with Usher. I've met dozens of talented and dedicated researchers who are working to cure it. I've spoken to Congress. I've written dozens of blog posts and given innumerable speeches.
I give up vacation days. Rather than sit by a pool relaxing, I fly to Iowa to see a research facility. I donate a healthy percentage of my own income to the Usher Syndrome Coalition and other related charities. Mind you, while it is a healthy percentage, it doesn’t amount to a lot of money. But I do those things willingly, because I believe in the cause.
I don't really like to talk about any of these things that I'm doing. Instead, I put my head down and make a note of the next goal, the next task.
The truth is, though, that I have been feeling overwhelmed lately. But before you get the wrong idea let me explain what has my head spinning. I'm overwhelmed for the best possible reason: This is the single most exciting time I have ever experienced with regard to Usher syndrome!
I have days where I am truly stunned by what has been accomplished in just the last 6 months alone. But that’s why I feel overwhelmed. We have great opportunities before us right now. I don’t want to miss them. I don’t want to lose this momentum. We have a superb full time executive director working for the Coalition but between she and I and other dedicated volunteers it's still simply not enough manpower.
I worry that we will miss this opportunity simply because I have to get on a train to go to my day job every morning and Krista doesn't have enough hours in the day to do it all in her full-time position.
What we need right now is YOU. We don’t need superheroes. We just need regular people like me. People who feel as passionately about this as I do and who can help our efforts. People who are committed. People who are willing to put themselves out there to make a difference.
There are several key projects where we need help.
We have worked with Congress to make Usher syndrome a higher priority at the National Institutes of Health (NIH). NIH has said that they spent $19M on Usher syndrome research last year. NIH has asked for guidance on where that spending would make the highest impact. A roadmap identifying knowledge gaps and endorsed by all the leading Usher syndrome researchers would give NIH the guidance they need to create Requests for Applications (RFAs) that target those specific knowledge gaps. That would serve the dual purpose of closing those knowledge gaps AND attracting additional researchers to the Usher syndrome community. With someone acting as a Roadmap Coordinator we could finalize and maintain the Usher Syndrome Research Roadmap as a living document. That someone could be you. Or it could be a position funded by you.
We have promising research in gene therapy and stem cell therapy and drug therapy. What we don’t have is enough clinical trial candidates. With just one percent of people around the world registered we would have more than enough candidates for clinical trials. The International Usher Syndrome Registry is the best source for researchers to reach potential clinical trial candidates and the best way for families to stay informed about upcoming trials and, hopefully, available treatments. With a Registry Coordinator we could work with the ophthalmological and otolaryngology departments at the major institutions around the world to identify and register Usher syndrome families. That someone could be you. Or it could be a position funded by you.
We have run symposiums and family conferences that grow every single year. These symposiums allow us to evaluate research progress and will provide a means to keep the roadmap fresh every year. They are also a tremendous opportunity for researchers to collaborate and are an incredible source of hope for families. With an Event Coordinator we could hold annual symposiums that combine a researcher conference with a family conference. That someone could be you. Or it could be a position funded by you.
Ideally these could be done by people in paid positions. But we would have to find the funding for them. In the interim these projects can move forward with the help of people like you. Smart, committed, resourceful people who want to see Usher syndrome eradicated. I know you're out there and I know you can do it. I'm just a regular guy and I've taken it on and I've made a difference. You can too.
This is your great opportunity.
I will be at the family conference this weekend and I would love to talk to anyone who wants to learn more and find a way that you can help. Together we can keep the momentum going until that day in the near future when the momentum stops because we have treatments. Then we can all kick back and toast our success. But until that day, we need your help.