In September of 2011, we hosted the first SMSRF fundraiser in Canton, CT. Ramping up to the event, we did some press and got a couple nice stories out there about SMS. Here they are:
Kim Velsey’s story in the Courant about SMS and Damian.
This article ran in the town papers all over central CT which had a decided CTMQ angle to it.
Since online versions of papers archive this stuff, here are the articles for posterity.
West Hartford Couple Working To Raise Awareness Of Son’s Rare Genetic Disorder
Sept. 20 Fundraiser To Aid Smith-Magenis Syndrome Research Foundation
By KIM VELSEY, email@example.com
The Hartford Courant
September 17, 2011
WEST HARTFORD —
Five-year-old Damian Wood made his debut at Norfeldt elementary school one evening in late August. The boy walked unhesitatingly onto the playground and quickly disappeared into the mass of exuberant new kindergartners.
His parents, Hoang and Steve Wood, remained on the outskirts, surveying the meet-and-greet popsicle party for a moment.
Steve watched as the boy — his slight, wispy eyebrows arcing over enormous brown eyes, dimples hidden behind a frown of concentration — padded up behind a pretty girl with a pink ribbon in her hair. Damian gave the girl’s shoulder a delicate tap and she spun around, chased him, shouted gleefully, “I’m going to catch you!”
In that moment, it was easy to believe that Damian was just another 5-year-old who would someday receive scores of college acceptance letters or pin a corsage on his prom date.
But he wasn’t. Steve sighed. “We’ve been told we should warn him off affectionate behavior, because when he walks up to the popular girl in seventh grade and hugs her, she might just laugh it off, but maybe she won’t.”
When Damian was about a year-and-a-half old, he was diagnosed with Smith-Magenis syndrome, or SMS, a rare genetic disorder resulting from a partial deletion of his 17th chromosome. The absence manifests itself as a varying spectrum of physical, behavioral and developmental characteristics including delayed development, chronic sleep disturbances, low muscle tone, intellectual disabilities, and violent tantrums. People with SMS also tend to be highly proficient with computers and other technology. Only about 600 people worldwide have been diagnosed with it.
During tantrums, Damian screams, throws himself to the ground, flings objects and punches himself in the head, hard and repeatedly — self-injurious behaviors and a high tolerance for pain are almost universal features of SMS. With Damian, the fits of rage come on with shocking speed and pass just as unpredictably.
There is no known cure for SMS, but the Woods and other parents hope that research will lead to behavioral, emotional and possibly gene therapies to improve quality of life. The week kindergarten started, the Woods were in the midst of planning a Sept. 20 fundraiser for the SMS Research Foundation at the Flatbread Co. in Canton. If nothing else, Steve said, the event would raise awareness, an ongoing battle for families whose children are prone to confusing public outbursts.
“One of my daydreams is to be somewhere with him when he has a meltdown and for people to say, ‘Oh, he has SMS,’ ” said Steve. “Is that realistic? No. But there is a way to identify SMS and give some answers.”
Now that they have their second child, Calvin, born in April, the Woods recognize the strangeness of Damian’s infancy. Quiet, cute and small, he slept a lot and hardly ever cried. It was only when he started missing milestones one after another that they knew something was wrong, although it took months of testing to determine what.
“You can never be prepared for that kind of news. I just couldn’t process it, that it was this lifelong thing,” said Hoang. As hard as knowing was, she admitted that it was also a relief to have something to work with, and to find the support of an online community.
Over the years, the Woods have developed strategies to deal with Damian’s SMS, like having an exit plan for every outing and cataloguing tantrum triggers — directives, challenges, surprises, and Steve crossing his legs (although it’s OK if Hoang or others cross their legs). Sometimes Damian seems as mystified by his behavior as they are; at other times he appears to know exactly what he’s doing.
“We know he messes with us sometimes,” said Steve. “He pushes buttons like a 30-year-old jerk in a bar.”
Damian is slowly reaching the childhood milestones. He just started talking this year — his words come out as whispery pops supplemented by sign language — at the same time that he’s learning to read and spell, meaning that whole phrases and sentences tumble out together. Toilet training remains a challenge.
“We know Damian will never live unassisted, will never drive a car,” said Steve.
“You just adjust expectations. You want the best for your kids, but I’m not going to teach him how to drive,” he said. “We were making lunch the other day and we got to talking about how cool it would be when he could make his own sandwiches,” he added.
“We treat every day like a new day, every hour like a new hour, sometimes every 10 minutes like a new 10 minutes,” Steve said.
The day of the party, Steve and Hoang were hoping that they would not have to gather Damian in their arms, would not have to carry the raging boy past all the playing children and chatting parents as he punched himself in the head, leaving bewildered stares in their wake. They were hoping for a good hour.
They got 15 minutes before their first patch of trouble. Damian had left a popsicle dangling in his hand as he roamed the playground and, inevitably, a chunk fell off, prompting a cry of surprise and anger.
“I was afraid that would happen,” said Steve, gingerly removing the popsicle from Damian’s hand and kicking the melting lump of ice under a walkway.
“It’s OK,’ he soothed, trying to chase away the dark mood taking hold of his son.
Was it OK? Damian considered, the popsicle had vanished from view, the playground’s many attractions beckoning. His features smoothed and he ran off, finding the girl with the pink ribbon. He tapped her shoulder again and she chased him. He went down the slide after a long pause and some pressure from a line of waiting kids, then made his way to the swings, where he sat for a long time, drifting slowly, considering the chain, the sky, checking his shoe.
Hoang and Steve watched from a short distance. “Should someone tell him to bend his legs?” said Steve. “Or is that next year?” Hoang laughed.
Then Damian’s friend Sammy came up from behind and pushed the swing. Later, when it was time to go, there would be another tantrum, another rescue, but for now Damian swung gently, with Sammy pushing, for what seemed like a long time.
West Hartford parents, facing a challenge with child’s disorder, holding fund-raiser for research efforts
By DOUGLAS P. CLEMENT
When Steve and Hoang Wood of West Hartford became parents in 2006, they had no way of knowing that their lingering, and sometimes lavish, vacations would be replaced by two intertwined voyages that are vastly different than what they were used to.
Their often difficult, but sometimes joyful, evolution as people, parents and champions of Connecticut’s cultural gems will reach a narrative turning point on Tuesday, Sept. 20, at a fund-raising event in Canton.
From 5:30 to 9 p.m. at the Flatbread Company in The Shoppes at Farmington Valley, the Woods will be there to raise money for the Smith-Magenis Research Foundation. Anyone who stops in to dine, grab takeout or bid on some nice silent auction items can connect to a story that’s difficult to hear—especially for parents—but ultimately cathartic.
It centers on the couple’s 5-year-old son Damian and how the family has been transformed—first by his arrival, and then, about 28 months later, by his diagnosis with Smith-Magenis Syndrome.
It’s not a disease, nor a condition. In one online posting, Mr. Wood explains that “Smith-Magenis Syndrome is a complex neurobehavioral syndrome characterized by multiple congenital anomalies and behavior problems, including craniofacial and skeletal abnormalities, variable intellectual disability, self-injurious and attention-seeking behaviors, speech and motor delay, and sleep disturbance.
“SMS arises from a deletion of the RAI1 gene on the 17th chromosome,” he continues. “It cannot be ‘cured’ but the SMS Research Foundation seeks, through grant funded research, to find ways to minimize the effects of the deletion on people like our Damian and their families.”
The fund-raiser, which will be more free-flowing than structured, is to benefit the foundation dedicated to raising funds to create research grants specifically to target the genetic pathways of SMS, and to better understand the vast array of areas this missing gene
Because there is no cure, the goal down the road, as Mr. Wood explained, centers on looking for a way to manage the issues faced by children who have the syndrome.
That and spreading awareness. “Nobody has heard of it,” Mr. Wood said of SMS.
He and Hoang certainly hadn’t heard of it when Mr. Wood’s avocation as a writer took a new twist when Damian was 6 months old. With those long vacations curtailed by the restrictions of new parenthood, the Woods began looking for informative distractions closer to home.
What Mr. Wood discovered in Connecticut was a long and deep roster of often under-appreciated museums, ranging form world-class art museums to quirky one-room repositories of a single town’s or village’s history. In appreciation of what the Nutmeg State had to offer his less-mobile family, he launched a blog to chronicle the state’s offerings and spread the word.
Connecticut Museum Quest was an immediate hit, and Mr. Wood’s narratives about his visits to museums, along with hikes, discoveries of curiosities and more, began building a large and broad audience.
On the site, he explains his approach, especially after realizing there “are some gray areas regarding what exactly defines a museum.”
“Over time,” Mr. Wood writes, “I’ve settled upon a slightly arbitrary system of worthiness which is subject to change and difficult to quantify. And really, with over 650 museums to visit, who’s going to complain?
“I include anything that calls itself a museum, any town history “room” or display no matter how small (some are at libraries) but the most difficult determination is regarding art galleries,” Mr. Wood says. “Some are permanent galleries with always changing exhibits—my thought is if they are not in business selling the art, then it’s a museum. This mostly applies to college art galleries like the ones at Wesleyan, St. Joseph’s College, and University of Bridgeport to name a few. I really like the American Association of Museum’s compiled definitions and think my blog is pretty much in line with that.”
Mr. Wood has a full-time job and the blog doesn’t, and is not intended to, make money. Nevertheless, it has gained a different kind of currency—Mr. Wood’s quests, and his online journals about them, have become an integral part of parrying the effects of SMS and giving Damian the fullest and best experiences possible.
One aspect is the family’s determination to get Damian out in the world to experience the cultural riches close at hand, and the other is more strategic—given the effects of SMS, having Damian be active helps curb the prominence of some difficult behavioral issues.
In the case of the Woods, they can reach out to make a difference for their son and others with SMS by holding events such as the Sept. 20 fund-raiser—to help pay for research into ways to improve the quality of life for the children.
So they go on adventures every Saturday. Sometimes it’s just Mr. Wood and Damian, and sometimes it’s the whole family, which now includes Damian’s 5-month-old brother, Calvin.
“In [going on adventures] we’re spreading awareness,” said Mr. Wood, who recounted feeling gratified when Damian serves as a bridge that creates a closeness between visitors to the cultural resources and the staff and volunteers.
The core realization—something that, inexplicably, the world and even caring folks never seem to fully understand—is that “Damian may be different but he has a lot to offer.”
He’s a beautiful boy, and while Mr. Wood acknowledges that caring for Damian can be difficult, he said that the family celebrates the small successes, things other people would simply take for granted. “The highs are much higher,” Mr. Wood said.
While admitting that he and Hoang are grudgingly conceding that some of the cliches about caring for special needs children are true, it’s still perplexing to be asked how they do it. “It is hard, it is tiring, but as a parent it’s what you do,” Mr. Wood said. “You just adapt and more forward, and every day is a new day.” What else can parents do?
The SMS Research Foundation is a 501(c)(3) nonprofit organization founded in June 2010 by two mothers of daughters diagnosed with SMS. It is raising funds to create research grants specifically to target the genetic pathways of SMS and to better understand the vast array of areas this missing gene affects. For more information, see the Web site at www.dreamfordamian.org.
There are no tickets or any cover charge for the benefit, which is open to anyone who wants to stop by. The Flatbread Company is donating 15 percent of its receipts that evening to the SMS Foundation, and The Olde Burnside Brewing Company of East Hartford in donating 100 percent of all sales of Ten Penny Ale.
Additionally, 100 percent of the funds raised through the silent auction go to the foundation.
Mr. Wood noted that only cash or checks—not credit cards—will be accepted for silent auction items. “Any other donations would be great,” he noted.
The Courant ran another article in 2015, prefacing our first brewfest fundraiser. Here’s the link and here’s the article:
CT Hops For Hope Beer Festival To Raise A Glass For Charity
By Leeanne Griffin
Two summers ago, a group of Connecticut friends — who had united over a shared love of craft beer — threw on costumes honoring characters from their favorite brewery’s can designs and teamed up to consume as many buffalo wings as they could stomach in a short amount of time. When the speed-eating contest had ended and they’d wiped the last traces of orange sauce from their faces, the “CT Brew Crew,” as they called themselves, had raised $5,375 for the Make-a-Wish Foundation.
The team’s efforts in the “Wings for Wishes” fundraiser at J. Timothy’s Taverne in Plainville had a personal connection: one of its members, a cancer survivor, had benefited from the foundation as a teenager.
In late 2014, team member Jay Thibodeau was motivated to plan another event for another charity, and a friend suggested an organization near and dear to one of their group: the Smith-Magenis Syndrome Research Foundation.
Stephen Wood of West Hartford is known for Connecticut Museum Quest, an extensive website full of his findings on the state’s museums, landmarks, hiking trails, history, restaurants and, especially, the recently burgeoning craft beer scene, of which he has particular knowledge and interest. He’s also the father of a 9-year-old son with Smith-Magenis Syndrome, a rare disorder resulting from a microdeletion within the 17th chromosome. SMS is characterized by a recognizable pattern of specific physical, behavioral, and developmental features, which vary in severity between individuals. Since Damian was diagnosed shortly after his second birthday, Wood has become an outspoken, passionate advocate for him and others around the world with the same disorder.
With their friend and his son at the forefront of their minds, Thibodeau and friends Dan Smith and Nikki Vinci began pulling together a special event — an intimate craft beer festival “by beer geeks, for beer geeks,” showcasing many of the local breweries Wood has highlighted on his website. The planning was done entirely unbeknownst to Damian’s father — though they vaguely asked him if he was “available on Aug. 30 for something really cool.” They didn’t share their official plans until several months into it, when they had secured a venue and several sponsors for what would become CT Hops for Hope, happening at the Quartette Club in New Britain.
“I said I don’t want Steve to have any knowledge of this whatsoever,” Thibodeau said, until they were ready to tell him what they’d organized. When they finally broke the news, “it was a pretty cool phone call, that’s for sure,” Wood said. On his website, he wrote that he and his wife, Hoang, “are humbled and filled with gratitude.”
Thibodeau and Vinci say the participating breweries and other sponsors have offered “tremendous support” for the event, especially if they’re familiar with Wood and his story, or are aware of the tight-knit Connecticut beer community that gathered to raise funds two years ago. “There have been so many places that, as soon as you mention to them what we’re doing, [they say] ‘Absolutely anything you need,'” Thibodeau said. “We’ve had a lot of that.”
“Steve has written so extensively about Connecticut beer for so long that he has become a resource,” Vinci said. She became friendly with Wood and the other organizers years ago, as the craft beer and social media coordinator for J. Timothy’s. “That’s one of the reasons why I think [sponsors] all were on board, because he’s been so supportive of Connecticut beer, and we can get this money to [SMSRF]; it brings more awareness to it.”
Wood said Connecticut Museum Quest began when Damian was born, as he and his wife, parents of a new baby, found themselves with limited ability to travel. Instead, they began to explore attractions within their own home state. As their son’s developmental delays became more noticeable, and even after they received his official diagnosis, “I just kept going,” Wood said. He continued to bring Damian along on many of his trips to local destinations, including breweries and restaurants. The purpose was twofold, he said: Not only did it keep Damian busy and occupied, it helped people in the community get to know him and learn more about his disorder.
That same community has embraced the idea of a fundraiser brewfest for his cause. The CT Hops for Hope organizers planned to begin selling tickets in mid-June, but as word got out, would-be attendees asked them to put tickets on sale earlier. When sales began on May 22, the early-bird entrances, with offerings of limited-release brews and food from sponsoring restaurants, sold out in 20 minutes. General admission tickets are still available, featuring tastings from about 24 breweries.
All of the proceeds from ticket sales will benefit the Smith-Magenis Syndrome Research Foundation, which supports research to improve the knowledge and understanding of SMS so that viable therapeutic options can be developed, according to its website. The foundation supports the SMS Initiative at Baylor College of Medicine in Houston, where two dedicated research scientists and their staff will focus on the study of the genomic disorder and the RAI1 gene that people with SMS are usually missing.
Wood said funding for the foundation almost always comes through grassroots efforts.
“Governmental funds for research for rare syndromes [are] not exactly flying through the air right now,” he said. “Science is not cheap, it’s expensive. And to keep the lab going, to have the latest equipment to do genomic research obviously involves very expensive instrumentation and the staff to do it. Any money we can give them to keep them going, to keep focused on this, is wonderful.”
Damian’s disorder, which Wood calls “rare and underdiagnosed” (it’s estimated that SMS occurs in roughly 1 in 25,000 live births) presents a variety of challenges, with intellectual, physical and behavioral delays. Disrupted sleep patterns are characteristic of SMS, which can exacerbate the violent tantrums and self-injurious behavior that are among the disorder’s known features. But despite these daunting struggles, Wood describes his son as incredibly sweet and empathetic. “The difficult behaviors they display are the syndrome, not ‘them,'” he said.
“This is not something you can just ‘fix,” Wood said of SMS. “Early intervention, continued therapies, the best environments possible [are] what gets us through our days and weeks.” But, he added, “genomic research shows an incredibly bright future.”
An anonymous donor has offered $50,000 to the SMS Research Foundation in the form of a challenge grant, meaning all funds donated to the foundation through Sept. 15 will be matched up to that amount. The fundraising goal for the brewfest is $30,000, through ticket sales, sponsorship and associated donations, the organizers said.
In the inaugural year for CT Hops for Hope, its planners aim to keep the event manageable so that attendees have the best experience possible. “I want people to walk away from this event and say, ‘I can’t wait until next year,'” Thibodeau said.
Tiffany saysAugust 1, 2012 at 2:54 am
Wow, what a story & journey. We are just beginning our journey with this knowledge of having SMS but ours so mild without the micro array test I don” t think the doctors would know? Take care I was hoping we live near by to visit but maybe someday.