Connecticut Boy’s Rare Disease Inspires Sports Drink Used by NFL, Other Athletes Running a marathon is one of the more intense acts of physical exertion the human body can endure. No matter how much an athlete trains, recovering from one is difficult. “You're beat up, you ache, you can't get up and stand without using your hands for support,” says pro-marathon runner Meb Keflezighi. To lesson the after-effects of the run, Keflezighi used to turn to standard energy drinks and shakes, but often they had unhealthy ingredients and would give him indigestion.

A few years ago, one of his trainers suggested he try Generation UCAN, a line of nutrition drinks by a Connecticut company of the same name. The gluten- and sugar-free drinks are made from SuperStarch, a complex carbohydrate derived from non-GMO corn designed to slowly release energy without crashes or spikes for those who use it.​Keflezighi (pictured right) first tried UCAN products before running the New York City Marathon in 2009; he won the race and has been using the product ever since. He says when he drinks it he doesn’t feel as much soreness the day after a race, that it is “smoother on the body and more gentle” than other sports drinks, and provides consistent energy level—“it can buy you two or three hours,” he says.

Keflezighi isn’t the only athlete who’s fallen in love with the product. Other public proponents of Generation UCAN include Vince Wilfork, the New England Patriots All-Pro defensive tackle, and women’s national 20K champion Meghan Peyton.

After his 2009 New York City Marathon win, Keflezighi reached out to Generation UCAN, which is based in Woodbridge, and told company representatives that he’d like to be a spokesperson, a position he currently holds. When he met the company’s founders he learned about the unusual history of the product. Initially, the SuperStarch that powers Generation UCAN drinks was not mass produced to help fuel athletes like Keflezighi; instead it was discovered as part of efforts control a terrible disease. As Keflezighi puts it, the product wasn’t for enhancing athletic performance, “it was for survival.”

Thirteen years ago, Jonah Feldman was born in Saint Raphael’s Hospital in New Haven. Though he was born after a full-term pregnancy, he had a low birth weight and multiple blood-sugar level tests needed to be performed on him in the hospital. “When he was a day old they were testing him and they thought that their meter was broken because it kept saying low or it was reading in the 20s,” recalls Wendy Feldman, Jonah’s mother.

Ultimately, medical staff would determine that there was nothing wrong with the hospital instruments and the readings regarding Jonah’s blood sugar were accurate. Jonah was born with Glycogen Storage Disease, which occurs in roughly 1 out of every 20,000 to 25,000 children born in the U.S., and hinders the body’s ability to break down certain carbohydrates, including glycogen.

Glucose is the main source of energy for the body; generally this energy is stored as glycogen in the liver until the body needs it. In the hours after a meal, the body converts this glycogen into glucose and releases it to power muscles and cells. In those with the genetic form of Glycogen Storage Disease, the enzyme that is used to convert glycogen to glucose does not work properly or is missing and the body cannot access its stored energy. The results of this condition can be fatal; as recently as the 1970s children with this condition rarely survived beyond the age of 1 or 2.(Left., Jonah is pictured in a recent photo taken at his Bar Mitzvah. Kathy Emons Photography).

By the time Jonah was born, the condition could be controlled, but doing so is not easy. Because his body has trouble converting glycogen into glucose, Jonah needed to be fed every 45 minutes at first and every couple of hours as he grew older; if he wasn’t the results could have been fatal. He would be fed Argo cornstarch with a feeding tube and would sleep through the feeding, but the process took a toll on his parents, Wendy and Dr. David Feldman (David Feldman owns and operates Feldman Orthodontics with his brother and father). The Feldmans would sleep in short shifts, and set multiple alarms to make sure they got up in time to feed Jonah, but even so they still worried. What if the alarm didn’t go off? What if they slept through it?

After reading a story about Jonah in a local newspaper, one of David Feldman’s patients told him about Stephen Squinto, a local scientist and cofounder of Alexion Pharmaceuticals in Cheshire.

David Feldman says his first meeting with Squinto was unconventional. “I knocked on his door and I said, ‘You don’t know me but I need your help.'” Though researching a cure for Glycogen Storage Disease was not feasible for Alexion, Squinto was moved by Jonah’s story. David Feldman says Squinto told him, “Alexion can’t but I will help you.”

Around the same time, the Feldmans set up the Children’s Fund for Glycogen Storage Disease Research. In 2004, with Squinto’s help they organized a symposium at Alexion Pharmaceuticals’ Cheshire headquarters. The symposium brought together some families of those with Glycogen Storage Disease as well as researchers. Wendy Feldman recalls meeting with other parents who endured the same sleepless nights as her and her husband. “We were a bunch of parents sitting their exhausted because we had to wake up every couple of hours to feed our kids, just to keep them alive,” she says.

Long term the group hoped to help find a cure for disease. Short term they wanted to find a way to better control it and get some sleep.

The day after the symposium, an Alexion researcher named Karen Kumor showed up at the Feldmans’ home in Cheshire.  She told them that there had to be some type of starch that would work more effectively than the Argo corn starch he was being given.

“Has anybody tested pea starch, lentil starch, legumes?” David Feldman recalls her asking. Though Kumor didn’t have any specific suggestions, her idea that there had to be something out there that worked more effectively set the Feldmans on a life-altering path that ultimately led to the creation of Generation UCAN.

Through a Google search they learned about a new type of starch that had been developed in a small lab in Glasgow, Scotland, by a scientist named Richard Tester. The substance was made from corn and supposedly provided a steady release of glucose, which keeps blood sugar and energy levels steady. Could it also allow Jonah to go longer without needing to be fed? The Feldmans were determined to find out.

Meanwhile, Peter Kaufman, a Connecticut IT entrepreneur met Squinto while performing in a production of “Fiddler on the Roof” put on by his synagogue B’nai Jacob in Woodbridge. Squinto told Kaufman about Jonah’s condition. Like Squinto, Kaufman was moved by the youngster’s story. After meeting Jonah and his parents, Kaufman, along with his longtime business partner Shoba Murali, joined forces with the Feldmans, and together with Squinto as a scientific adviser, formed a small company to research the disease. “When we first got involved the only objective of the company was to help cure Jonah’s disease,” Kaufman says.

Connecticut Boy’s Rare Disease Inspires Sports Drink Used by NFL, Other Athletes

• • •Members of the company met with Tester and were hopeful that his starch product could be helpful for Jonah. After David Feldman met with Tester, the Generation UCAN company was formed and began manufacturing Tester’s starch which they named SuperStarch. Around 2009, Jonah began using it. The results were astonishing.

Instead of needing to be fed Argo cornstarch every one to three hours, using SuperStarch Jonah could go seven to eight hours. It allowed his parents to sleep through the night for the first time since he had been born.

“When it first happened we couldn’t believe it,” recalls Wendy Feldman. “We tested it overnight with his doctor, we were expecting him to crash and he never did.”

After further tests, they concluded that the super starch was reliable and they started sleeping most of the night. “My husband and I actually are rested—we’re not going to bed feeling as nervous," says Wendy Feldman.

But that was only the beginning of the starch’s usefulness. Members of the company were beginning to wonder if the slow-releasing SuperStarch could be used for fitness purposes and by athletes. A clinical trial of SuperStarch products was conducted at the University of Oklahoma and confirmed that use of SuperStarch maintains desirable blood glucose levels, demonstrates a muted insulin response and enhances the body's ability to use fat as an energy source.

The company brought in Jeff Volek as one of its scientific advisers. At the time, Volek was a professor at the University of Connecticut’s Department of Kinesiology, and he is currently a professor in the department of Human Sciences at The Ohio State University. Volek says he was immediately impressed with the effectiveness of the product. “SuperStarch is unique in that it has a very slow absorption profile that manifests in a slow steady release of glucose into the circulation,” he says. “This has three main effects: one, it avoids the spike and subsequent crash in blood glucose associated with most sugars and starches; two, it provides extended and stable blood glucose levels beyond any other carbohydrate source; and three, it has a minimal impact on insulin levels which permits greater use of fat for fuel relative to other carbohydrate sources.”

He adds, “I highly recommend UCAN over any other carbohydrate source. Most athletes are consuming too many sugar-based products. There is a substantial downside to overusing sugar in terms of performance, recovery, health and longevity.”

Prototypes of Generation UCAN were developed. It was one of these early forms of the product that Keflezighi received before running the New York City Marathon in 2009. Generation UCAN products can be found in select gyms and health food stores and are sold throughout the U.S. It comes in several forms ncluding the sports drink mix (which has several different flavors including lemonade and pomegranate blueberry), and the protein-enhanced drink mix, which comes in chocolate and vanilla flavors.Jonah recently turned 13. He’s a friendly, articulate kid with curly black hair, who is a diehard fan of the New York Rangers hockey team, and enjoys tennis and skiing. He still uses Argo corn starch during the day and relies on SuperStarch to get through the night. He says he can feel the difference in energy during the day when he uses SuperStarch.

When he grows up Jonah wants to be an orthodontist like his dad and remain involved with Generation UCAN. By publicizing his story he has inspired others with Glycogen Storage Disease to control their condition by taking SuperStarch as well, something he is justifiably proud of. “It’s very exciting for all of us,” Jonah says.

(Above, Jonah and Keflezighi are pictured together a few years ago). 

Jonah is also an inspiration for others involved with the company.

Before winning the Boston Marathon in April, Keflezighi, who is 39, drank a Generation UCAN drink. He also used it before the New York Marathon in November, a race in which he finished fourth, despite his age. A few days before the New York run, he stopped in Connecticut to speak at Jonah’s school, the Chase Collegiate School in Waterbury, and meet with Jonah and the family again.

He continues to be inspired by young Jonah and says meeting him and his family has been special. “It's been a wonderful, wonderful, experience for me,” Keflezighi says.

Contact me by email eofgang@connecticutmag.com and follow me on Twitter, and connect with Connecticut Magazine on Twitter, on Facebook and Google +

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