Ryan and Mason Schultz pose lakeside during a family vacation to New Hampshire in August 2015.
Editor’s note: In the June 2008 edition of the Hamilton Post, we featured David and Maria Schultz, who had started a nonprofit called Ryan’s Quest that February. Their 2-year-old son Ryan had been diagnosed with Duchenne muscular dystrophy in December 2007, and the Schultzes hoped to use Ryan’s Quest to find a cure to DMD. According to the Ryan’s Quest website, boys affected by DMD typically will lose their ability to walk between the ages of 8 and 12, require respiratory support by their late teens and survive only into their 20s. Seven years later, we asked David and Maria Schultz for an update on Ryan’s Quest and their family.
Since 2008, Ryan’s Quest has grown considerably. We have raised and contributed over $1.7-million towards Duchenne research and have been a driving force behind the movement to help bring a potential medicine or a treatment out of the drug pipeline and into a sustainable clinical trial.
When Ryan was first diagnosed there was nothing for boys with Duchenne. Today, we are on the cusp of making history. Science is moving fast; and we are, too. We are helping fund several trials for Duchenne and hope for Ryan’s involvement in one within the near future. In addition to funding research, we have been advocating for the approval of promising treatments across Capitol Hill. Never would we have thought, years ago, that major pharmaceutical companies would have an interest or stake in Duchenne muscular dystrophy research. It’s rewarding to see that our efforts in deep collaboration with our partner organizations have made such opportunities for thousands of boys worldwide and that there are several clinical trials in motion today that could be the key that unlocks our children’s’ futures.
We never expected in 2008 that Ryan’s Quest would grow to this extent. However, we are happy and proud that it did.
We have learned that we can’t stop. We can’t take our foot off the pedal. We have learned that we can’t expect others to do this for us. We needed to do this for our son. Ryan is the driving force behind our mission each and every day. There was so much to learn on the business, medical, pharmaceutical and even the government end of this fight. We have to continually question, learn, act and pursue every angle in order to make things happen. It’s the only way that this works.
As parents, we must advocate for our son. We were never afraid to ask for anything from anyone. The worst thing that could happen would be that they would say no. If so, we would find someone else who would say yes.
Most of all, we have learned that there is good in this world. There are people who want to help and who give their hearts and true commitment to this cause. We could have never grown to this extent without our board members, army of volunteers, sponsors and donors. We thank them for continuing to stand by us day after day and year after year in support of our son and thousands of boys across the world.
Our largest fundraiser is our annual Valentine Ball. This event is such an elegant and memorable night that highlights our mission, our goals, our accomplishments and, most of all, our boys. In 2016, the event takes place at the Westin Princeton on Saturday, Feb. 13. There are many contests, raffles and prizes; in addition to a silent auction that ranges with items for sporting events, concerts, getaways, jewelry, photography, experience packages and more. The night begins with a cocktail reception, followed by a full-course served meal with a land and sea duet. Entertainment includes live music performed by The Nerds. Guests always look forward to the themed dessert bar to end the night on a sweet note. This event typically sells out and has become a community favorite. The theme for this year’s Valentine Ball is “Winter Wishes.”
As for Ryan, he is a very happy fourth grade student in Hamilton Township. He loves things that most 9-year-old boys do: hanging with his friends, cousins and brother, video games, drums, swimming and, most of all, football. He excels in school, enjoys cooking and has a major sneaker obsession.
Ryan’s signature gesture is a thumbs-up. It means “all is OK.” This gesture gives us hope that our efforts will make a difference and that Ryan will be OK. That’s what we hope for, wish for and pray for each day. We make the most of life each day and take time to be present with our children and to enjoy all of the smiles, laughs and moments that matter most.
For information on sponsorship opportunities or tickets for the Valentine Ball event, go online to ryansquest.org.
