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Duchenne Muscular Dystrophy only affects boys and is the number one lethal genetic disorder in childhood, affecting one in every 3,500 births. Schultz said that Duchenne generally predicts that children between the ages of 8 and 12 will lose the ability to walk. He said that children with the disease eventually will become paralyzed and will lose the ability to use their arms and upper body. He said that generally boys with the condition will live into their early 20s and there have been some cases this year of children passing from the disease as young as 13 or 14.
“We just want to do everything we can to make a difference. We decided that this was going to be our pay it forward to help fight the disease by starting the foundation, raising money and awareness and earn funding for promising research,” said Schultz.
Schultz said that there are many small foundations like Ryan’s Quest all over the world that are raising money for Duchenne. Because of that, Schultz said that three years ago, Ryan’s Quest and about 30 other Duchenne foundations from around the globe came together to become incorporated and form the Duchenne Alliance.
“We are coming together to make the research process a lot more streamlined. We developed a product [Duchenne Dashboard] that takes in research proposals and from there, we make it easier for the scientists to get to the foundations that are willing to help them and at the same time we are trying to make it a very transparent process. These research projects that come in from all types of universities and private companies are vetted a lot better,” said Schultz. “By using the Duchenne Dashboard, it is allowing that process to take place and keeping checks and balances so that the universities and private companies are not getting more money than they really need for a particular project. In the alliance, you are still your individual charity but you are working together.”
Schultz said that Ryan’s Quest also helps families that are involved in clinical trials and helps them with travel costs. “If there is a clinical trial, it doesn’t mean that the travel costs are included and it is very costly. We had a grant with John Hopkins University to pay for the travel costs for people to get to the trials,” said Schultz. He said that sometimes it is hard for researchers to fill clinical trials because families cannot afford to get there, so Ryan’s Quest wants to help families be able to afford the necessary transportation.
Schultz said that since 2008, Ryan’s Quest has contributed $1.3 million to Duchenne research. Ryan’s Quest has raised most of that money from its events, such as a 5K run, a Valentine’s Day Ball and a golf outing that includes sponsors such as former New York Giants Antonio Pierce and Jessie Armstead, who is also co-owner of Hamilton Honda.
The annual Ryan’s Quest Family Fun Fest was the first fundraising event that Ryan’s Quest decided to try, Schultz said.
“The event started as a picnic and it really grew. This is the seventh year and it grows every year. We have a lot of support from the community to make it effective in terms of raising money,” said Schultz.
The fun fest includes many different activities for children, such pony rides, a kids’ dance party, a petting zoo, bounce houses, race cars, sand art, fire jugglers, face painting, clowns, balloon artists, magicians, a dunk tank and hayrides. There will also be live performances, food and drinks. There will be a motorcycle run to prelude the day’s festivities and a raffle to win an original Ryan’s Quest electric guitar made custom by the Grice Middle School wood shop students.
“I think the most rewarding part of Ryan’s Quest is being able to contribute and help these research projects move forward. There are a lot of projects that need that early funding to continue going and many of them are based in university settings and they are not getting the sponsorship money so foundations like ours can help them move forward if their research projects have merit,” said Schultz. “Any time that we are able to write a check that can help move forward with Duchenne, that is a great feeling. That is really the rewarding experience and why we are really doing this at the end of the day.”
Ryan’s Quest Family Fun Fest will be held Sunday, June 1 at Tall Cedars Grove in Yardville from noon to 6 p.m. Tickets are $25 for adults, $10 for children ages 5 to 12 and free for children under the age of 5. The ticket prices include food, beverages and all activities. Tickets can be purchased here, at Foley’s Shop N’Bag in Hamilton, any Investors Bank in Mercer County or at the gate the day of. If purchased at the gate, adults tickets are $30. All proceeds from the event will benefit Duchenne Muscular Dystrophy research. Sponsors for the event include Investors Bank, Foley’s Shop N’Bag and Buzzetta’s Festival Foods.