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Major Vermont brands create custom teddy bear to raise money for 4-year-old with rare disease

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Major Vermont brands create custom teddy bear to raise money for 4-year-old with rare disease


SOUTH HERO, VT – Several well-known Vermont brands are rallying around a four-year-old boy with a rare and devastating neurological disease.

Companies such as Orvis, Johnson Woolen Mill, Commando, and Simon Pearce have dressed and accessorized a four-foot teddy bear named “Henry Bear” in order to raise funds for the treatment of Henry Saladino.

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The Saladino family is hoping the bear can help raise money for Henry’s treatment.

Seeking treatment for rare neurological disease

WBZ-TV met Saladino in Boston in 2022 when his family first started seeking a treatment for his rare neurological disease called Alternating Hemiplegia of Childhood (AHC). Henry’s AHC causes weekly seizures and paralysis, which threaten to permanently damage his brain or take his life.

“One full day, every other week, life just stops, and we’re grounded with oxygen. And then, once a month, he also has a very big, very long seizure,” Henry’s mom, Mary Saladino, said.

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Since then, Henry’s family has embarked on the uphill climb to treat Henry’s illness with a therapy called an antisense oligonucleotide or ASO.

Scientists at the Yu Laboratory at Boston Children’s Hospital are producing ASO candidates, microscopic synthetic strands of DNA and/or RNA that bind to the genetic mutation that is producing the protein causing Henry’s disease.

“We are still optimizing the best ASO candidates and, at the same time, doing a screen in mice for toxicity,” Mary said.

The process is risky and costly. In all, the Saladinos must raise $3 million dollars to pay for drug development. They are just over halfway to their goal.

Brands create fundraiser for young boy

That is why Mary, a Vermont native, called Ashley Farland, a former celebrity chef turned Vermont home-furnishings designer and the founder of DandyLion. Mary asked Ashley to create a custom Henry pillow. Ashley decided to take things a step further.

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“I was like, yeah, I like this woman. We could definitely do better than a pillow,” Farland said.

Farland reached out to Vermont Teddy Bear, and the idea behind “Henry Bear” was born. More and more brands started accessorizing the bear, which has custom Commando jeans complete with “H’s” sewn into the pockets.

“I think Henry’s story resonates, and I think people are good,” Mary said.

On August 10, more than a dozen Vermont brands will join as part of Henry’s Village, a dinner and concert fundraiser to raise money for Henry’s treatment. The event will be held at Snow Farm Vineyard and Winery in South Hero, Vermont.

Henry will return the love the way he knows how.

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“He loves the Eric Carle book brown bear, so we said you’re going to have your own brown bear, and all these helpers are showing up for you, and his response was to look at the bear and give him a hand kiss,” Mary said.

For more information on Henry’s story, click here.

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Vermont

Vermonters could save money by switching energy systems

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Vermonters could save money by switching energy systems


WATERBURY, Vt. (WCAX) – Rural Vermonters can save up to 10 thousand dollars on upgrades to energy systems.

The Vermont Public Power Supply Authority, representing eleven municipalities across the state, is partnering with Efficiency Vermont to help improve energy efficiency in homes and businesses.

Last year, Efficiency Vermont found that communities outside of the interstate corridor spend more of their income on energy. Some of these systems could have also been completely damaged in recent flooding.

“Most people, myself included, as a homeowner, don’t necessarily want to go out and spend the $20,000 or however much it would be to replace your home heating system or completely reconfigure it. However, under the circumstances, I think, folks have to make that tough call,” Sarah Braese with Vermont Public Power Supply Authority said.

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The rebates are available on a first-come, first-serve basis through 2026.



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Vermont suffered millions in damage from flooding, will ask for federal help

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Vermont suffered millions in damage from flooding, will ask for federal help


MONTPELIER, Vt. — The toll of damage from recent flooding in Vermont exceeds $6 million, and the state is asking the federal government for help, officials said.

Vermont residents dealt with heavy flooding that damaged homes and infrastructure earlier this week and came on the heels of wider flooding in the state. Republican Gov. Phil Scott said Friday the state is asking the Federal Emergency Management Agency for assistance in several counties.

A very early assessment found damage to public infrastructure exceeding $6 million, well above the threshold for a federal disaster declaration, Vermont officials said.

“Many of the communities impacted by the July 30-31 storms were still cleaning up from flooding less than a month ago,” Scott said. “This intense rainstorm devastated homes, businesses, roads, bridges, culverts and other public infrastructure.”

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A federal disaster declaration would provide reimbursement to communities for storm repair and response. Vermont officials are asking residents to report damage to the state so it can make the best case possible for federal aid.

The recent flooding in Vermont has undone cleanup and recovery work that followed flooding just a few weeks ago, Scott has said. Scientists have said stronger, more persistent storms fueled by a warming world are among the factors causing the mountainous state to suffer more flooding.

The flooding that occurred earlier in July stemmed from the remnants of Hurricane Beryl. Scott said Saturday the state has also made a formal request for a federal disaster declaration for those storms.



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Volunteers in the Northeast Kingdom begin checking in on stranded neighbors

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Volunteers in the Northeast Kingdom begin checking in on stranded neighbors


Eighteen volunteers gathered in a 150-year-old blue schoolhouse in East Burke Thursday morning to begin the long trek to check in on stranded neighbors.

“Thank you all so much for coming out on such short notice today,” said Megan Durling, East Burke School co-director.

Durling split the group into teams. Some of them would be making first physical contact with residents who hadn’t been able to leave their property since floods tore away roads Tuesday morning.

More than 100 residences in the Northeast Kingdom have been damaged or destroyed, and extensive damage to local roads has stranded scores of people in their homes.

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More from Vermont Public: Flash flooding tears through rural communities in Vermont’s Northeast Kingdom

Municipal officials say it could take many weeks in some instances to restore local infrastructure, and concerns here are mounting for vulnerable residents who have no electricity, no running water and no way leave their property by car.

Durling told the assembled volunteers what should classify as a “high-priority case.”

“Life threatening. Building is not habitable. Do not have their insulin,” she said.

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Peter Hirschfeld

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Vermont Public

Flood recovery volunteers Megan Durling, left, and Matt Lipschitz head into the woods of North Kirby to access homes that were isolated by road washouts on Thursday, Aug. 1.

Durling and two volunteers took on territory in North Kirby, where they hiked through fields and a forest to access homes belonging to residents such as Dwight Davis.

“So my name is Megan. I’m with a volunteer group that’s just checking on folks that are isolated in this area,” she said.

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“Sorry you had to walk all the way up here,” Davis responded.

Davis’ son had already brought some food and other essentials. Power had been restored, and a local contractor told Davis that the washed-out road heading into town should be drivable again by the end of the day.

Taking stock of needs in a community like North Kirby is arduous work. These Northeast Kingdom roads are the last miles in Vermont. Some towns didn’t get electricity until the 1960s, and infrastructure is still exceedingly vulnerable to severe weather.

The half-dozen or so homes the volunteers canvassed in this neighborhood were all doing fine. But Durling got some alarming news from another crew while they were out.

“I got a message about folks in the part of Kirby I was concerned about,” she said. “There is an elderly woman in need.”

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Because development patterns in Caledonia, Orleans and Essex counties are diffuse, so was the damage from Tuesday’s floods. Kirby, Morgan, Island Pond and St. Johnsbury were all hit hard. Red Village Road in Lyndonville saw some of the most severe devastation to land in the region.

Massive road washouts have isolated a 3-mile stretch where multiple homes were swept away and strewn on the banks of the Hawkins Brook.

A photo of a road way with double yellow lines, black asphalt and a giant hole in an area that was washed out by a river next to the road. Trees and green grass line either side of the road.

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Red Village Road in Lyndonville has numerous washouts following flooding on Tuesday, July 30.

“It took my neighbor’s house away. That was pretty interesting to see,” said Jake Carter. “We watched it happen.”

Carter has a homestead in between bridges that, according to town officials, won’t get even a temporary fix for weeks. The basement and first floor of his old farmhouse flooded, and the river tore more than half his pasture away.

Carter said he’s just grateful that his cows and pigs and beloved old goat survived.

“They made it. They’re smart,” he said. “They all gathered in the barn, at the highest part of the barn.”

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Carter’s been living in a camper he parked in the middle of the now-untraveled road, and grilling up burgers for neighbors.

“My little strip here is all really good characters that help each other out real well,” he said. “But I know there’s a lot of problems out there right now, so I’d be nervous for a lot of people out there.”

More from Vermont Public: Lyndon neighborhood reckons with heavy damage as more rain moves through Vermont

Adam Sangiolo, who just moved into this neighborhood in May, is especially worried about some of the older residents who are now in their fourth day of being stranded without power or running water.

“It’s amazing to live in a community that everyone wants to help each other. It really is,” Sangiolo said. “But it’s like … it’s just too much at this point. I don’t see people being able to keep this [up] and sustain what’s happening here.”

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A woman and a man in T-shirts sit on the front porch of an old house.

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Caitlyn Severy and Adam Sangiolo, who live on Red Village Road, pictured on Wednesday, July 31.

On Thursday morning, Justin Smith, Lyndonville’s municipal administrator, surveyed a quarter-mile washout on Red Village Road as contractors hauled in culverts for the repairs ahead. He said he knows residents here want out, but he doesn’t have a timeline for them yet.

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“I don’t,” Smith said. “I was told just this first leg alone is a week, so we’re not going to be to the Sheldon Brook bridge for a week.”

Members of the local fire department have been accessing stranded residents to deliver water, offer directions on how to get out by foot or four-wheeler, and see if residents want to be evacuated, according to Smith, who said he’s worried the town won’t be able to find enough material to make all the needed repairs.

He also has no idea how they’re going to pay for it.

Lyndonville is still waiting on a public assistance check from the Federal Emergency Management Agency for the floods that hit here in July of 2023. This is the fifth major flood to hit the town in 13 months.

“We’re at that point where the purse is pretty much dry and we don’t have any liquidity anymore where we can pay,” he said.

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More from Vermont Public: For some Vermont flood survivors, FEMA was the second major disaster last year

People who live in the Kingdom are accustomed to making do under harsh conditions. But even lifelong residents of this place are taken aback by the scale of what happened Tuesday.

An older man in a T-shirt, jeans and baseball hat leans against a guardrail near a dirt road.

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Rick Gorham, pictured on Wednesday, July 31, has lived on Brook Road in Lyndon for more than 60 years.

Rick Gorham has lived on Brook Road in Lyndon for more than 60 years. The Mountain Brook it’s named for decimated about a mile of road, swallowed two houses and damaged two others.

Gorham’s house is high and dry, but his driveway is between two stretches of Brook Road that no longer exist. He said he doesn’t mind the inconvenience. He is worried, however, about what’ll happen to the couple that lived in the old schoolhouse down the road from him.

Half of their home fell into the river after the brook carved a 15-foot ravine under the ground where their living room used to be.

Pat Webster, who lived in the home with her husband, Dave, told Vermont Public Friday about their escape from the structure.

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“I woke up at 12:30 [in the morning] because I couldn’t stand hearing the sound of [the brook]. And Dave got up right after I did, and he said at one point, ‘It’s getting bad out back.’ So we were just sort of making coffee and we were in the kitchen and suddenly we hear the foundation begin cracking,” she said. “And so we just said, ‘OK, time go.’ And ran out through the muck, the deep muck, to the garage.”

Webster’s friend on the hospice choir she sings with has a second home that doesn’t get used very often, and so the couple has a safe and comfortable place to stay indefinitely. Webster said she feels enormously lucky right now. But she’s grieving the loss of community she shared with neighbors she’s lived amongst for nearly 50 years.

“We can never go back to our little neighborhood, unless something miraculous happens. Our elderly neighbor up the hill, I’m not sure I’ll ever see him again. He’s on his last days,” she said.

A photo from above shows downed tree debris, mud, houses and trees and mountains, along with construction vehicles.

Kyle Ambusk

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Red Village Road in Lyndonville around 5:15 p.m. on Tuesday, July 30.

Webster just lost her home and most of her belongings. But she said the thing that tears deepest right now is her worry for the displaced residents in Lyndonville and other nearby towns who don’t have a place to live.

“That is a huge consideration, far more a consideration than we are, because we have the great luck of our friends and family,” she said. “I don’t know what the answer is there.”

More from Vermont Public: ‘We can’t give up,’ Gov. Scott tells flood-weary Vermont

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Megan Durling said local volunteers are well-suited to perform the task of checking in on neighbors and assessing needs in the immediate aftermath of a disaster like the one that hit the Kingdom on Tuesday.

“This is the work of a functioning society — you take care of your neighbors, period,” she said. “And if you are expecting that government officials are going to be able to step in and take care of everything? Well, we can’t have a democracy anymore. That’s not going to function.”

What is required of government, Durling said, is addressing the big-picture problems that contribute to, and are a result of, catastrophic weather events. Climate change, poverty, displacement and the lack of affordable housing are well beyond the purview of local volunteers, she said.

As more frequent severe weather events dislocate more and more Vermonters, long-term recovery groups, such as the Kingdom United Resilience and Recovery Effort, say state and federal governments need to reform disaster-response apparatuses that have proven wholly inadequate at meeting the needs of residents.

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