Man with nemaline myopathy takes his chances on Who Wants To Be A Millionaire
posted on October 10, 2009 - 10:48am
Sargon de Jesus has always been a trivia buff and a fan of game shows that test trivia smarts. So when he earned an appearance on the popular TV game show Who Wants To Be A Millionaire, de Jesus was "totally psyched" and ready to take his shot at some big money.
Busy man
As someone who has cultivated a vast array of interests and talents, de Jesus possesses a broad and varied base of experience...
High school senior Lindsay Lee, who has congenital muscular dystrophy, seeks to combine math and medicine.
posted on December 3, 2009 - 4:10pm
Many people, upon noting the academic credentials of high school senior Lindsay Lee, might characterize her as a math whiz.
The 17-year-old, who has congenital muscular dystrophy (CMD), is quick to demur. “Oh, I don’t know if I’d say that. I just really like math … and, well … I’m pretty good at it.”
Tune in Jan. 28 when the show “Live for the Moment,” hosted by Jeff Probst, makes dreams come true for Roger Childs, who has ALS.
posted on January 22, 2010 - 6:03pm
On Jan. 28, a CBS special will help raise awareness of ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease) by describing how a Colorado man is making the most of his life while battling the deadly disease.
Titled “Ordinary People, Extraordinary Challenges,” the special is part of CBS’ new “Live for the Moment” reality series co-produced by Jeff Probst, host of the network’s popular “...
Three up-and-coming clothing companies — created by four young men with neuromuscular diseases — are offering unique designs
posted on June 24, 2010 - 5:15pm
Four young men with powerful entrepreneurial spirits and a flair for design are making inroads in the country’s custom clothing industry. Although each of the three companies offers its own distinctive designs, the owner/operators have a lot in common.
Victor Pineda travels the world promoting 'inclusive societies' for young people with disabilities (video)
posted on July 13, 2010 - 5:36pm
Life has been a whirlwind of activity for Victor Pineda lately. The 31-year-old bachelor got married the first week in July. He earns his Ph.D. in government planning around the first of August.
But these momentous events are almost insignificant compared to the rest of his typical schedule. In 2005 Pineda created the Victor Pineda Foundation (VPF) and today it commands most of his...
Sidelined by bone cancer, limb-girdle MD and depression, Steve Williams found a way to get back out on the open road
posted on July 20, 2010 - 3:55pm
The “passenger” in Steve Williams’ motorcycle sidecar doesn’t say much, but if it could talk, it probably would have plenty of stories to tell.
Jonah Bascle, who has Becker muscular dystrophy, uses jokes, ramps and street protests to raise disability awareness in New Orleans
posted on October 8, 2010 - 3:55pm
Jonah Bascle (rhymes with “rascal”) unleashes his zany brand of stand-up comedy on New Orleans nightclub and restaurant patrons four or five times a week. As an unusual consequence of these gigs, more and more of the historical city’s old buildings are becoming accessible to people in wheelchairs.
As a guy who uses a wheelchair himself due to Becker muscular dystrophy, Bascle, 24, knows first...
A new documentary recounts Rob Roozeboom’s struggles with limb-girdle muscular dystrophy and his founding of Rise Ministries
posted on March 16, 2010 - 10:32am
In the documentary “Waiting to Rise,” Rob Roozeboom’s small son asks him, “Dad, why do you walk like that?”
“Because I have muscular dystrophy, son,” he answers.
The boy is unconvinced. “Penguins walk like that,” he observes, “but they don’t have muscular dystrophy.”
At this stage of his life, Roozeboom, 33, can laugh uproariously at that assessment. But as a boy himself, and later as a teen, his...
Having a disability doesn’t mean you can’t find the love of your life; young adults with neuromuscular disease share their stories and advice
posted on February 14, 2012 - 11:54am
If you have limited movement, how do you make the first move on a date? Is it OK to bring a personal care attendant on a date? At what point would you let a "significant other" provide personal care for you?
When the recession brought an end to his 25-year journalism career, Peter Callas Jr. remembered his parents’ message: Never give up
posted on April 15, 2010 - 12:35pm
Peter Callas Jr. remembers as if it were yesterday the day his father gave him “the F.D.R. talk.”
It was 1973, and Peter Jr., then 13 years old, had just been diagnosed with facioscapulohumeral muscular dystrophy (FSHD).
