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Organizing the "River Run for Ryan": An Interview with Marie and Jonathan Hunt

The Hunt family hosted "River Run for Ryan," their first walk/run, in Guttenberg, IA this year on August 30. Below is an interview with Marie and Jonathan Hunt sharing their experiences on the process of coordinating the event. Marie and Jonathan’s son, Ryan (age 3), was diagnosed with Hunter syndrome just before his second birthday. For more details on other walk/run events, please visit the National MPS Society at www.mpssociety.org.

Question: How did you get interested in hosting a walk/run?

We became interested in hosting a walk/run from attending Laps for Lucas, a walk/run hosted by another MPS family in Cedar Rapids, IA last year. As a parent you feel so helpless that you can't make everything better for your child but this is a way we can do something for our son, Ryan. Through this event, we can raise awareness and money for research to find a cure and we liked the fact that the money actually goes to research that is going on now.

Question: What is the process of getting started?

First we had to convince ourselves that we could pull it off. Then we contacted the National MPS Society and received the information on getting started. The manual the Society provided was most helpful as it walks you through the process and what you need to do each step of the way. The people at the Society have been great at answering our MANY questions. We also approached some of our friends who we thought would be interested in helping us. With their support and diversity of strengths we felt confident that we could make this happen.

To get things started, my husband and I went to the city manager to ask about the kinds of permits we needed from the city and discussed different venues possibilities. Initially, we would have used a sports field but none suited our needs. We came up with a route through the city and went back to the city council and park board equipped with an event summary and proof of insurance for volunteers. We had a map of where we wanted our run to go and also approached the city police to ensure adequate staffing on event day. For registration and other logistics, we rented the gazebo in the park. We were given the city's full support and then some!!

Question: How did you end up choosing your venue?

Our town is on the Mississippi river so we wanted to incorporate that as much as we could in our event. Thus the name, River Run for Ryan. We thought it would be a beautiful run/walk along the river. The city granted us permission to shut down the main street along the river and we used the walkway along the river through the park for the homestretch. We are excited to have such a great course. There is a gazebo in the park that we used for registration. There are also restrooms in the location which is convenient for the families.

Question: What has been your experience organizing the walk/run?

Our experience was very positive. The support from the city made things a lot easier. The businesses in town have been more than happy to help with putting signs up, donating, promoting our event on the radio and in the local newspapers. Our committee has been most helpful too. They have given their time and resources to help us. It is our first year so you put in a lot of time coming up with the course, making up a sponsor letter, making posters, and creating a brochure. There are helpful templates available from the National MPS Society for that too.

Question: What do you hope to achieve from this event?

We set a goal when we started organizing the event. It was to raise awareness for MPS disorders because it is not something many people have heard of. Another goal was to raise $10,000 for research. This is no small task in a town of 1800 people. To date, we have pledges of over $11,000!! In the process we have gotten more involved in our community and hopefully will create interest in our little town from our advertising for the event.