By Mariann Main, LPC
Amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, is a diagnosis no one wants.
Several of my closest friends bear the burden of debilitating illnesses. They include Alzheimer’s, multiple sclerosis, Parkinson’s, lupus, Type I Diabetes and, of course, many have battled cancer, including this columnist. Thankfully, no one I have known has received the inevitable death sentence of ALS, an irreversible neurodegenerative disease which destroys nerve cells of the brain and spinal cord.
Both 42-year-old Chris Rosati and 29-year-old Pete Frates are slowly becoming incapacitated because of mutual ALS diagnoses. Chris received his fateful news in 2011 while Pete was diagnosed in March of 2012. Each is married. Chris has two young daughters while Pete will become a first-time father in just a few weeks. Rosati is from Durham, North Carolina, and Frates hails from the Northeast. Frates was the baseball team captain at Boston College.
Ironically they resemble each other in facial appearance, not just from each being bound to a wheelchair due to atrophied non-functioning muscles. Even though Pete is younger, his ALS progression has been faster and more debilitating. He can no longer speak. Chris still has a voice, just barely. As far as this columnist can determine, they have never met.
Rosati and Frates are on a mission to raise public awareness about ALS via social media and have succeeded far beyond what either of them or any of us could have expected. Rosati is the “feel good guy.” His “Big Idea for the Greater Good” has included strategically planning and executing “The Great Krispy Kreme Heist” of December 3, 2013.
Inspired by his love of warm doughnuts and the corporate headquarters for Krispy Kreme located nearby, Rosati was loaned the sleek Krispy Kreme Cruiser, a 1960 Starliner, for that chilly day’s doughnut delivery. Loaded with a bevy of volunteers and 1,000 doughnuts to distribute throughout the Research Triangle area of Chapel Hill, Durham and Winston Salem, he cruised to hospitals, schools and nursing homes and reached many random recipients in-between “to inspire, cheer or encourage others.” Rosati’s motto in distributing free doughnuts was, “You get twelve chances in that box to make someone happy.”
His most recent venture was a red-carpet event to launch his BIGG challenge, which included a video premier of short winning films from those who had been inspired by Rosati’s story and incorporated his message into their own lives to touch others. Some of the ideas that had been implemented by those featured, included the sponsoring of a candlelit dinner at an upscale restaurant attended by homeless women in the area. Another idea inspired adults to once again enjoy childhood activities such as romping on a playground, coloring, or kite-flying. And a final “feel-good idea” was filmed at a mall with a spin-the-roulette-wheel for giving away hugs, compliments, or other inspiration to strangers.
Considering that Pete Frates was a star athlete versus a marketing guru like Rosati, his message of “The Ice Bucket Challenge” has been equally as powerful as Rosati’s and a financial windfall to the national ALS Association. Last year, from July 29 to Aug. 19, the ALS Association raised $1.9 million in donations. Due to the explosive social media and television publicity this year, that same approximate 20-day tenure has bestowed $22.9 million in donations.
A bevy of celebrities, corporations, musicians, politicians, sports teams, television anchors or just about any other group you can name has taken the celebratory challenge of dumping a bucket of ice water on them to raise both awareness and money for ALS research. If an individual is challenged, within 24 hours, that person must either participate in an “ice dumping” or contribute $100.00 to ALS. A chain-reaction Kennedy family dumping, with the final “iced” member being Ethel Kennedy, has been humorously televised repeatedly. Upon Ethel’s soaking, with the help of her grandchildren to lift the bucket, she challenged President Obama to partake. To date, he has declined to participate, but has contributed $100.00.
In closing, my Aug. 13 column specific to Robin Williams’ suicide received much positive reader commentary, and I appreciate the feedback. At the time of authoring last week’s entry, Williams’ early-stage diagnosis of Parkinson’s had not yet been revealed.
When I consider the philanthropic achievements and incredibly positive and inspirational attitudes of Chris Rosati and Pete Frates when facing their own premature mortality from ALS much too soon, I can only wonder what Williams might have accomplished for increasing awareness and the monetary contribution he could have orchestrated to promote Parkinson’s causes? His incredible talent, wit and humanitarian spirit were lost much too soon and sadly we will never know what difference Williams’ might have made in taking steps for curing that incapacitating disease.
Mariann Main is licensed as a Counselor in both Ohio and Georgia. She is a Delaware, Ohio native and Journalism graduate of The Ohio State University. You can reach her directly via MariannMain@GMail.com.