When Branford’s Max Herzog was 18 months old, doctors dispensed some simple words of advice for his parents.
No need to continue bringing Max back every six months, they told Jesse and Stephanie Herzog. Call us if something changes.
In January 2016, when he was 6 months old, Max had been diagnosed with Duchenne muscular dystrophy, a fatal, childhood genetic disease that impacts one in 3,500 boys worldwide, and is characterized by progressive muscle weakness. There is no treatment or cure. The average life expectancy: 26.
Starting this month, both Mystic Oil and Murphy Beverage Co. have initiated campaigns on the Shoreline to support Max’s battle through the nonprofit Cure Rare Disease, a Boston-based non-profit dedicated to precision therapeutics for rare genetic diseases.
Those efforts are testament to an unlikely set of circumstances involving three families that might well save the life of Max, a happy-go-lucky 4-year-old who enjoys everything Batman, before he even knows he has the disease.
One family is the Horgans. Rich Horgan is CRD’s founder and president. His younger brother Terry is afflicted with DMD. So were three of his uncles on his mother’s side, all of whom had succumbed to the disease at 14, 16 and 19.
Another family is the Mirabitos. Joe Mirabito, president and CEO of Mirabito Energy Products, was the energy supplier to the Montour Falls, N.Y. gas station owned by Horgan’s parents. He knew the family. He wanted to help Terry. Each year he hosted a golf tournament. He decided to include, among the causes the tournament would benefit, muscular dystrophy.
And then, of course, there are the Herzogs: their involvement began in early spring 2018 when an email about the golf tournament pinged into the inbox of Jesse, president of Guilford’s East River Energy.
“Jesse saw this MDA [Muscular Dystrophy Association] thing pop up and he said ‘I should probably reach out to Joe [Mirabito] and see what the connection is, you never know,’” said Stephanie Herzog.
Get in touch with Rich Horgan, Mirabito told Jesse. A few days later, they met at a Starbucks in Windsor.
By then, the Herzogs had lived with Max’s condition for 2 ½ years. There was, it seemed, “nothing else to do to help him, no options,” as Stephanie put it.
“It was like a funeral combined with the song ‘Live Like You’re Dying,’ ” she said. “We decided we were going to live each day to the fullest. It was like, okay, where are we going, what are we going to do.”
Of course, she added with a laugh, “it gets pretty exhausting living each day to the fullest.”
At the Windsor Starbucks, Stephanie recalled, “my first impression of Rich was that he looked like a kid.” By the end of their meeting, though, “we had more information about how to be proactive with our son than we’d gotten from any of the top specialists in the country. We had hope.”
Horgan, who’s 27, had grown up watching his younger brother Terry struggle through daily life, living with severe restrictions and the tumult of hopes raised only to be dashed through failed treatment after failed treatment. He watched him age out of pharmaceutical trials, unable to meet the tight criteria.
“At the end of the tunnel, there’s no hope for these boys,” he said. “It’s morally bankrupt that this type of thing happens day in and day out not only with DMD but across many other rare diseases as well.”
He sailed through Cornell, the first in his family to attend college. At Harvard Business School, he had, he said, his “come-to-Jesus moment.”
Through the frustration of his family’s experience, he realized that among the most significant obstacles to effective treatment were the lack of collaboration among researchers and the length of time it takes to develop a treatment — “the industry-tradition 10-year, $2-billion study for an unworkable one-size-fits-all approach,” as he put it.
“As anyone who’s been touched by a fatal, rare disease knows, time is of the essence,” he said. “If I didn’t act, no one would.”
He formed a team of world-class researchers, geneticists, and clinicians nationwide with the mission, as the CRD website reads, “to pioneer the development of a new platform for customized therapeutic treatments that can be applied to a range of rare, genetic diseases.”
With the recent addition of the Herzogs to CRD’s board, the organization also joined “the growing wave of the patient and the patient’s family taking their future into their own hands by raising money to support researchers with a very specific goal of developing those customized therapies,” he said.
“This is not about buying wheelchairs or sending kids to camp. This is about a cure.”
This past April, CRD used gene-editing technology to develop a customized therapy which successfully cured Terry’s cells in a lab dish. The next step is to inject that therapeutic into mice. The organization is working toward approval for a first-in-man clinical trial next summer.
That breakthrough inspired the involvement of Peter Zelken, president of Mystic Oil. Through the next 12 months, the company will donate a significant portion of gas sale profits at Guilford Citgo off Exit 59 and Mystic Village Mobil.
“All you have to do is fill up at one of those stations,” Zelken said, adding the aim is to raise $40,000. “This is about saving a little boy’s life.”
On that same reasoning, Matt Murphy, owner and CEO of Branford’s Murphy Beverage Co., a distributor of fine wine, craft beer, and artisan spirits—and Max’s uncle — is spearheading an eight-week fundraising program to support the initiative. Through the end of November, look for tags with the sticker CRD, and $1 and $5 in-store pinups, in 100 wine shops and liquor stores up and down the Shoreline.
“We’re on the one-yard line,” he said, “and Max is next in line. They’ve already taken swabs for him.”
“Just think about it this way,” he added. “Every bottle of wine that you buy and every one- and five-dollar donation goes directly to saving a 4-year-old boy in your own backyard.”
For a list of participating suppliers in Murphy’s Distributors initiative for Max Herzog and CRD, call 203-483-3100. To support CRD through Mystic Oil’s campaign, fill your tank at Mystic Village Mobil, 66 Whitehall Avenue, Mystic or at Guilford Citgo, 455 Boston Post Road, Guilford.
For more information on, or to donate to, CRD, visit cureraredisease.org.