Downtown
Sanfilippo syndrome is a genetic disorder that effects young children, resulting in mental disabilities, blindness, nerve damage and seizures. Those afflicted may live into their teens, while others with severe forms of the disease die at an earlier age. There is no specific treatment for Sanfilippo syndrome, but a Cleveland-area startup owner literally climbed a mountain to help find one.
Tim Miller, CEO of Abeona Therapeutics, joined a team of climbers representing the Team Sanfilippo Foundation to scale Mount Rainer in Washington. The 14,411-foot ascension represented the latest in a series of fundraisers designed to fight the deadly disease through research. Thus far, the effort has raised nearly $22,000.
Abeona, a company developing gene- and plasma-based therapies for rare genetic disorders, recently entered its first trial on replacing a Sanfilippo sufferer's malfunctioning DNA with a correct copy. The therapy produces an enzyme needed to dispose of sugar molecules that are otherwise stored in cells. This storage causes progressive damage in the patient.
"We're the only ones in the world using this particular approach," says Miller. "Our next step is to enroll more patients."
Miller battled freezing temperatures, high altitudes and steep rock faces during the 36-hour climb to Ranier's crest. The early-September jaunt burned 16,000 calories and left him physically and emotionally exhausted. Disappointment Cleaver, a 70- to 80-degree rock incline located at 12,500 feet, was perhaps Miller's most harrowing challenge.
"You're scaling 1,000 feet of rock in the middle of the night with a short rope," he says. "You just have to keep moving."
Miller and his teammates - among them a father of two boys diagnosed with lethal Sanfilippo syndrome type A - reached the summit at sunrise, a sight that washed away all previous trials.
"There was this great sense of joy when we reached the top," says Miller. "We got to see the entire world unmapped before us."
Tackling Mount Rainier was difficult, but nothing compared to what those dealing with Sanfilippo syndrome must endure, adds the medical entrepreneur.
"I had to live through mental, physical and emotional hardships (on Mount Rainier)," Miller says. "But parents whose children have (Sanfilippo syndrome) must live with the disease for years. That's courage."
Tim Miller, CEO of Abeona Therapeutics, joined a team of climbers representing the Team Sanfilippo Foundation to scale Mount Rainer in Washington. The 14,411-foot ascension represented the latest in a series of fundraisers designed to fight the deadly disease through research. Thus far, the effort has raised nearly $22,000.
Abeona, a company developing gene- and plasma-based therapies for rare genetic disorders, recently entered its first trial on replacing a Sanfilippo sufferer's malfunctioning DNA with a correct copy. The therapy produces an enzyme needed to dispose of sugar molecules that are otherwise stored in cells. This storage causes progressive damage in the patient.
"We're the only ones in the world using this particular approach," says Miller. "Our next step is to enroll more patients."
Miller battled freezing temperatures, high altitudes and steep rock faces during the 36-hour climb to Ranier's crest. The early-September jaunt burned 16,000 calories and left him physically and emotionally exhausted. Disappointment Cleaver, a 70- to 80-degree rock incline located at 12,500 feet, was perhaps Miller's most harrowing challenge.
"You're scaling 1,000 feet of rock in the middle of the night with a short rope," he says. "You just have to keep moving."
Miller and his teammates - among them a father of two boys diagnosed with lethal Sanfilippo syndrome type A - reached the summit at sunrise, a sight that washed away all previous trials.
"There was this great sense of joy when we reached the top," says Miller. "We got to see the entire world unmapped before us."
Tackling Mount Rainier was difficult, but nothing compared to what those dealing with Sanfilippo syndrome must endure, adds the medical entrepreneur.
"I had to live through mental, physical and emotional hardships (on Mount Rainier)," Miller says. "But parents whose children have (Sanfilippo syndrome) must live with the disease for years. That's courage."
Cuyahoga County's population utilizes arts and culture in a variety of ways, from museums and theaters to smaller community festivals and neighborhood events. Recently released findings from Cuyahoga Arts & Culture (CAC) show just how connected residents are to the region's arts offerings.
CAC's 2015 Report from the Community shares stories of county residents impacted by the 210 organizations CAC funded in 2015. Self-reported data from these groups revealed more than $383 million arts-related expenditures county-wide, including upwards of $158 million in salaries to 10,000 employees.
Other key statistics from the report include:
* 50 percent of CAC-supported programs had free admission in 2015
* Nearly 6.9 million people were served by arts programming last year, including 1.5 million children
"The report provides good evidence of the story we're telling," says Karen Gahl-Mills, CEO and executive director of CAC. "Arts and culture is having a huge impact on Cuyahoga County."
Nor are culture lovers only visiting conventional venues like the ballet or a gallery, notes Gahl-Mills. Nature and science organizations, community gardens and other non-traditional entities are attracting crowds through their own arts-infused efforts.
"It's not just big institutions; we're shining a light on smaller organizations," Gahl-Mills says. "There's extraordinary variety."
This year's report also relates the experiences of community members impacted by arts and culture. One featured resident is Patty Edmonson, an employee at the Cleveland History Center, who returned to the region to curate the center's 13,000 dresses and 40,000 textile objects.
"Residents are the ones who benefit from the dollars we invest," says Gahl-Mills. "We use tax dollars to support the arts, so we need dialogue with the public to understand what work we can do."
This summer, CAC has been visiting festivals and events to get further feedback from the community. The undertaking includes "street teams" going out to barbershops and farmer's markets and asking folks what inspires them about the arts. Gahl-Mills says public funding for the arts is a key facet in making Cuyahoga County a vibrant, attractive place to live.
"People care about the arts and we need to hear from them," she says. "The more we know, the better grantmaker we can be."
CAC's 2015 Report from the Community shares stories of county residents impacted by the 210 organizations CAC funded in 2015. Self-reported data from these groups revealed more than $383 million arts-related expenditures county-wide, including upwards of $158 million in salaries to 10,000 employees.
Other key statistics from the report include:
* 50 percent of CAC-supported programs had free admission in 2015
* Nearly 6.9 million people were served by arts programming last year, including 1.5 million children
"The report provides good evidence of the story we're telling," says Karen Gahl-Mills, CEO and executive director of CAC. "Arts and culture is having a huge impact on Cuyahoga County."
Nor are culture lovers only visiting conventional venues like the ballet or a gallery, notes Gahl-Mills. Nature and science organizations, community gardens and other non-traditional entities are attracting crowds through their own arts-infused efforts.
"It's not just big institutions; we're shining a light on smaller organizations," Gahl-Mills says. "There's extraordinary variety."
This year's report also relates the experiences of community members impacted by arts and culture. One featured resident is Patty Edmonson, an employee at the Cleveland History Center, who returned to the region to curate the center's 13,000 dresses and 40,000 textile objects.
"Residents are the ones who benefit from the dollars we invest," says Gahl-Mills. "We use tax dollars to support the arts, so we need dialogue with the public to understand what work we can do."
This summer, CAC has been visiting festivals and events to get further feedback from the community. The undertaking includes "street teams" going out to barbershops and farmer's markets and asking folks what inspires them about the arts. Gahl-Mills says public funding for the arts is a key facet in making Cuyahoga County a vibrant, attractive place to live.
"People care about the arts and we need to hear from them," she says. "The more we know, the better grantmaker we can be."
Bon Appetit takes a CLE foodie tour
From Bon Appetit:
“People ask me why I left Portland, and I tell them that Cleveland now is very similar to what Portland was 15 years ago,” said Robert Stockham, general manager at the city’s premiere coffee roaster, Rising Star. Except Cleveland is a city with its own swagger, and a cost of living so low that Stockham said, “You can buy a house for less than a car, and you should never pay full retail price for anything here.” Also: Cleveland is the place for a hipster hotdog hangout that puts Froot Loops on its dogs, a brewery that has residents lining up for Christmas-spiced beer, and one of the world’s best symphony orchestras. Come hungry, and let Stockham be your guide.
Take his whole tour here.
“People ask me why I left Portland, and I tell them that Cleveland now is very similar to what Portland was 15 years ago,” said Robert Stockham, general manager at the city’s premiere coffee roaster, Rising Star. Except Cleveland is a city with its own swagger, and a cost of living so low that Stockham said, “You can buy a house for less than a car, and you should never pay full retail price for anything here.” Also: Cleveland is the place for a hipster hotdog hangout that puts Froot Loops on its dogs, a brewery that has residents lining up for Christmas-spiced beer, and one of the world’s best symphony orchestras. Come hungry, and let Stockham be your guide.
Take his whole tour here.
