Syracuse (WSYR-TV) - For more than 40 years, Labor Day weekend has meant the MDA Show of Strength telethon on NewsChannel 9.
This year, the national telethon has been revamped into a tighter, faster-paced format, mixed with inspirational stories. One of those stories comes straight from Central New York.
Nolan and Jack Willis are twins from Fayetteville who have Duchenne Muscular Dystrophy.
For half their lives, the 11-year-olds have spread the word for the Muscular Dystrophy Association, letting people know about the need for research dollars and why services like MDA summer camp are so important.
“Just really fun to go for a week, get away from your usual life and meet other kids that go through the same experience,” Jack explained.
“I think for them, the biggest point is being able to be out there and voice how they handle their disease every day. How they move forward to project that to other kids that are dealing with it. It's important for them,” said Matt Willis, Jack and Nolan’s father.
The Willis twins will tell their story on the national MDA Show of Strength Telethon over Labor Day weekend.
Jack and Nolan have been taking part in MDA-funded clinical trials, starting a couple years ago when they traveled to Columbus, Ohio for 32 weeks straight for infusions.
“Me and Jack are missing a few genes, and basically the medicine is building a bridge over the gene and going to slow down the progression, or even stop the disease from progressing,” Nolan explained.
Through all that travel, they maintained a 4.0 grade point average in school.
Their Story of Strength is one of the centerpieces of this year's telethon - which is shorter than ever before at two hours - but packed with entertainment and inspirational messages like theirs.
One thing that won't change is that all the money raised from Central New York viewers will stay in Central New York to help the MDA assist families who face muscle disease every day.
The MDA Show of Strength telethon moves to the ABC television network this year, but you can still see it here on NewsChannel 9 starting on Sunday September 1 at 9 p.m.