Carson Rhodes, a four-year-old who lives in Wilmington with his parents, Jacob and Jacqualin, has been dealing with a condition known as non-ketotic hyperglycinemia (NKH) for all of his young life.
This weekend, his family is presenting “Carson's 3rd Annual Tournament For a Cure,” a benefit softball tournament. It is being held Aug. 27 and 28 on the Upper Field at Living Memorial Park in Brattleboro to raise money to help fund research to find new treatments for NKH.
Games will start at 8 a.m. There will be a 50-50 raffle, and refreshments and t-shirts for sale.
According to the National Organization of Rare Disorders (NORD), non-ketotic hyperglycinemia is “a rare, genetic, metabolic disorder caused by a defect in the enzyme system that breaks down the amino acid glycine, resulting in an accumulation of glycine in the body's tissues and fluids.”
Children with NKH “who survive the neonatal period have severe developmental delay. Most individuals do not reach milestones past those reached by the typical 6-week-old infant,” according to NORD. “Developmental delays can range from mild to profound.”
Fewer than 500 people worldwide are living with NKH. That's because children who have the condition rarely live past their fourth birthday. There is no cure, but NORD says there are a variety of different treatments that can improve outcomes for some NKH patients. The hope is that genetic therapy might be the breakthrough that helps children like Carson live longer and healthier lives.
According to Carson's mother, Jacqualin, he has been taking five different medications daily to keep his enzyme levels balanced.
“Gene therapy is still in its infancy and, if we can raise enough money, we may be able to start clinical trials and possibly help children live better lives without having to take those nasty medications,” she wrote to The Commons.
She wrote that funds for research “come primarily from families, friends, and kind strangers” because it is not profitable for large pharmaceutical companies to invest in treatments for a rare disease such as NKH.
Last year's tournament raised $6,000, and Carson's family and friends hope to top that this year. To sign up for the tournament, email Jacqualin at [email protected] or visit “Carson's 3rd Annual Tournament For a Cure” under events on Facebook. A GoFundMe page can be found by searching “Carson's Cure for NKH” at www.gofundme.com/f/carsons-tournament-for-a-cure.
Fairchild, Heed again finish first in USCA Nationals
• Fresh off a first place finish in the New England Canoe Racing Championships on Aug. 7 in Brattleboro, Peter Heed of Keene, N.H. and Michael Fairchild of Brattleboro traveled to Newaygo, Mich. to compete in the 2022 U.S. Canoe Association (USCA) Nationals, which were held Aug. 12-14.
For the eighth consecutive year, the duo finished first in the Senior C2 event in 1 hour, 52 minutes, and 39 seconds. Coincidentally, the win streak started in Newaygo in 2013, the last time the USCA Nationals were held there.
According to Fairchild, the event rotates between different sites, mostly in the Midwest and the Northeast.
“The race format in Newaygo differed from the New England race in Brattleboro, which was a deep water loop race,” Fairchild said in an email to The Commons. “In Newaygo, it was a point-to-point race that started in a lake, then had us go out and around an island. Then we portaged around a power dam, and then put in for a 13-mile run down the Muskegon River.”
In the mens' senior C1 race (one person in a canoe), Fairchild placed first for the second year in a row with a winning time of 1:56:34. He said it was the fifth time he has won a C1 title.
Fairchild said the 2023 USCA races will be held in Lock Haven Pa., on the west branch of the Susquehanna River, where he and Heed will go for a ninth straight Senior C2 title.
VPA prepares for another sports season
• The Vermont Principals' Association (VPA), the governing body for interscholastic sports in the state, held their annual media day in Montpelier on Aug. 17 and unveiled changes and new initiatives for the 2022-23 school year.
One of those changes is the re-alignment of the state's four divisions for high schools for the “core” sports of soccer, basketball, baseball and softball.
In Vermont, schools are placed in one of four divisions for two-year cycles based on their male and female enrollments.
There's a wide range of school sizes in Vermont. For example, perennial Division I powerhouse Champlain Valley in Hinesburg draws from more than 1,000 student-athletes in Chittenden County. It is by far the biggest public high school in Vermont. At the other extreme is Craftsbury, in the Northeast Kingdom, which relies on 31 boys and 24 girls to fill its teams in Division IV.
Brattleboro remains in Division I in boys' and girls' soccer, boys' and girls' basketball, softball, and baseball, while Bellows Falls and Green Mountain will continue to play in Division III. Leland & Gray has dropped down from Division III to Division IV, where they will join Twin Valley.
• Tentative dates and sites for the fall state championship games were also announced by the VPA. The field hockey title games will be played on Saturday, Nov. 5, at a site to be determined, while boys' and girls' soccer will play on Friday, Nov. 4 and/or Nov. 5, at sites to be determined. Football will have its championships on Saturday, Nov. 12, at Rutland High School.
• The VPA said it is launching a committee to explore the possibility of adding video game competitions to the list of varsity sports. Some schools currently offer e-sports at a club level, but whether e-sports will follow in the path of bass fishing and and Ultimate disc, the two newest VPA-sanctioned activities, remains to be seen.
VPA Executive Director Jay Nichols and Assistant Executive Director Lauren Thomas told reporters on Aug. 17 that while competitive video gaming does provide some positive life skills, such as collaboration and problem-solving, they said they understand the concern about reducing the time that teenagers spend in front of screens.
“We want to plan rather than react to e-sports,” Thomas told the Rutland Herald. “It's a new frontier, for sure.”
There is certainly interest in offering e-sports, as the VPA polled principals and athletic directors around the state and found that 75 percent said they were interested. While there was initial resistance from athletic directors about making bass fishing and Ultimate disc varsity sports, Nichols said both have become very popular at the schools that now offer them.
Interscholastic e-sports competitions involve nonviolent games, Thomas said, and the plan is to have plenty of oversight to keep gaming positive and constructive.
The most important reason why e-sports are now on the table is that there is value to participating in extra-curricular activities. School administrators will tell you that students who participate in after-school activities are more likely to show up for classes and more likely to feel a sense of belonging to the school community.
• Finally, the biggest concern at the VPA Media Day was boorish fan behavior at games. A number of high-profile incidents of racist and misogynistic taunting, harassment, and bullying by fans led to the VPA adopting a standard of conduct that includes a procedure to suspend a school from competition if they engage in abuse of players, coaches, or officials.
The VPA says it will continue to emphasize good sportsmanship in high school athletics.
“We don't have control over other people's behavior. All we can do is respond to it and try to be proactive on the front of it,” Nichols told the Valley News. “We have to take strong action against people when they do engage in those behaviors.”
Senior bowling roundup
• Week 12 of the Brattleboro Senior Summer Bowling League on Aug. 18 at Brattleboro Bowl saw Angus & Company (39-21) have another 4-1 week to hang on to first place with one week left in the season.
Good Times (38-22) once again had a 4-1 week to stay in second place, just one game out of first. The Strikers and The Keglers (both 31-29) are tied for third, followed by the Number 1's (30-30), Stayin' Alive (25-35), Trash-O-Matic (24-36), and The Anythings (22-38).
Pamela Greenblott had the women's high handicap game (240) and series (671). Alex Theilen had the men's high handicap game (248), while Gary Montgomery had the high handicap series (644). Good Times had the high team handicap game (838), and Trash-O-Matic had the high team handicap series (2,447).
In scratch scoring, Chuck Adams led the men with a 634 series that featured games of 224, 215, and 195. Warren Corriveau Sr. had a 584 series that featured games of 209 and 191. Robert Rigby had a 555 series that featured games of 209 and 205, and Montgomery had a 527 series.
Greenblott (494) had the women's high scratch series, which featured games of 181 and 175. Debbie Kolpa and Josie Rigby each had a 171 game and Shirley Aiken rolled a 170.