New York City, N.Y., June 26, 2017 (Newswire.com) - Six-year-old Frank Dinucci Jr. has Duchenne muscular dystrophy. Nevertheless, he is one of the most inspirational young people to have come out of New York City. While he suffers from a degenerative condition, he is hopeful that new research at the University of Columbia will improve his quality of life.
Frank Dinucci Jr. was diagnosed at the age of three, when his little sister Isabelle was born. Around one in every 3,500 boys in this country are born with this condition, and life expectancy is less than 30 years. However, Frank is a fighter and, although he is just 6, he believes he will be the exception to the rule. His father, Frank Dinucci Sr., has been inspired by his son's bravery and wants to use this to show others that there is hope.
Frank Sr. says: "Unlike many other children with Duchenne, Frank hasn't shown any rapid deterioration signs. He is stable. While there is no cure for the condition yet, the fact that he hasn't gotten any worse over the past two and a half years is promising. And I believe it is his positive attitude that is behind it."
Each year since his diagnosis, Frank Jr. and Frank Sr. have traveled 500 miles using a cargo bike. They do this in order to raise more funds for research into Duchenne. This year's ride will start on July 8, which will start from New York City and end in Raleigh, North Carolina on July 20. The Rush family was originally from Raleigh, which is why this has always been their destination.
The funds raised this year will be used to fund a doctoral fellowship that will conduct research on Duchenne, hoping to find new and better forms of treatment in order to not just slow down the disease, but also reverse the damage that it has done. This means that those affected by it who are wheelchair bound may have the opportunity to become mobile again.
Duchenne is a genetic condition that is characterized by generalized weakness and progressive muscle degeneration. There are nine different forms of muscular dystrophy, of which Duchenne is one. What is known about the condition is that it affects those who do not have the dystrophin protein, which is responsible for the maintenance of muscle cells. Most children with the condition are diagnosed when they are approximately three years old, just like Frank Jr.
Over the past three years, the funds raised by the Dinucci family has helped to advance treatment opportunities for those who are diagnosed with the condition. In fact, not long ago, few people who suffered from Duchenne would live past their teens, but this has now been extended to an average life expectancy of 30.
Frank Jr. and Frank Sr. have attended a number of prominent research facilities, including the University of Columbia, where the fellowship will be based. Frank Sr. says: "It was amazing visiting the facility together with my son. To think that there could be someone there in the next few weeks who might just be able to turn his life around is fantastic. We truly believe that the breakthrough will come very soon, particularly considering how well Frank is doing with the medication and treatment that is already available."
Each year, the two Franks try to come up with something unique for their ride. This year, they hope to attract more people to ride with them. Every participant will be charged $10 to ride any distance with them, whether it will be just a five-minute ride or the full 500 miles. As a reward, they will be given a tasty lunch and a frozen ice cream, provided by New York City local businesses.
Frank Dinucci Jr. also asked his father if it would be possible to do more this year. He understands the importance of raising enough funds for the fellowship and because he feels so strong at present, he wants to do more as well. He says: "I don't actually cycle during the ride myself. That's all my dad's work. But I really wanted to do something physical as well, so I will be doing the Big Climb in Raleigh once we get there."
The Big Climb will be a climbing wall set up at the arrival point in Raleigh, which Frank Jr. will climb as soon as they arrive there. People have the opportunity to sponsor him specifically for this climb, which is already attracting a lot of attention. Frank Sr. says: "I am so proud of my son! He shows the world that there is no need to ever slow down."
Source: Frank Dinucci
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