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The family of a 7-year-old Windsor boy with a rare brain disease has joined up with a charity with the hope of receiving funding to help in the research of the disease.
Vinny Warden, a first-grader at Tozer Primary School, was diagnosed with Canavan disease, a devastating genetic brain disease, in 2004 at 10 months of age. Vinny's family — parents Kara and Brian and older sister Kayla — are joining forces with Jacob's Cure to help it win the top prize of $250,000 from the Pepsi Refresh contest during the month of January.
According to a press release sent out on the contest, Jacob's Cure is a nonprofit organization founded by Jordana Holovach in 2000 to save her son, Jacob, who was diagnosed with Canavan at 6 months old. Children with Canavan disease, like Vinny and Jacob, become trapped in their bodies, develop seizures, lose their ability to see and swallow and die by the first decade of life if untreated.
The press release said that the research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene therapy or started the recommended treatments. Because of the research generated by Jacob's Cure, Vinny received experimental gene therapy when he was 2 years old.
People can vote for Jacob's Cure three times per day through Jan. 31 by visiting www.refresheverything.com/jacobscure via e-mail and Facebook, or by texting 105628 to 73774 (PEPSI) to vote by phone.
Voters also can follow on Facebook for daily voting reminders at: www.facebook.com/jacobscure or sign up to receive reminder e-mails at www.jacobscure.org/vote.
Vinny's sister, Kayla, said her little brother is very aware of his surroundings despite the disease. He uses a wheelchair but goes to school full time every day.
“He knows everything that we're saying and is very aware of everything around him,” said Kayla, 17, a senior at Windsor High School. “He just can't vocalize it with his words the same way as everybody else. He knows everything that's going on around him.”
Kayla, who plans to attend the University of Northern Colorado in the fall to study elementary education, said she reads to Vinny a lot. She also volunteers at Tozer.
“We have a lot of good times together,” she said. “He definitely is a pretty cool kid. He loves school. He loves going there every day. We play with his little dinosaurs. He loves people. He just loves life. We just spend all the time we have with him.”
Vinny's mother, Kara, said the $250,000 prize wouldn't go to any of the families, but it would be used for research. In addition to funding research, the press release said that a small portion of the grant will go to fund the upcoming Canavan Disease Research Summit & Family Conference, which will unite leading researchers in the field of white matter disease as well as many of the Canavan families from around the world. Since the cost of care for a Canavan child can be tremendous, many families are relying on Jacob's Cure winning the grant in order to attend the conference and help out with travel expenses, according to the press release.
“Jacob's Cure is the nonprofit organization that has applied for the grant,” Kara said. “Vinny was and still continues to be the only child that's ever been diagnosed with Canavan's Disease at Children's Hospital. They've never, ever had a case. There is no cure. Most children die within the first decade of life.”
Kara said Vinny is actually doing well.
“He's in first grade at Tozer. I think his favorite place to be is at school. He has friends that fight over who gets to sit by him at lunch,” Kara said. “He has a good network of people that care for him. He's nonverbal, but at this point, he's still very interactive with his surroundings and understands what you say to him. What happens in his brain is that the messages don't get to where they need to go.”
Kara said winning the $250,000 prize would be huge for the research element of the disease.
“Canavan Disease is considered an orphan disease, which basically means that there just are not enough children diagnosed with it. In the United States, there are less than 100 (kids with Canavan),” Kara said. “It gets very little research. It gets hardly any federal funding. The majority of funding for research comes from grants like this. It comes from parents who hold fundraisers. This amount of money would be huge.”
ABOUT JACOB'S CURE
Jacob's Cure is a 501c3 non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a fatal genetic brain disorder that
affects children at birth. Because of an enzyme deficiency, an acid in the brain accumulates to dangerous levels causing catastrophic effects to the
normal formation of myelin (white matter) in the brain that is responsible for transmitting nerve impulses from one part of the body to another. It is
the lack of white matter that leaves Canavan children incapable of performing the simplest functions. Even if they live to their full life expectancy – 3 to 10 years untreated – they become blind, paralyzed, prone to seizures, and increasingly lost to the world around them. Since its inception in September 2000, Jacob's Cure allocates money raised to research in gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. The efforts to date have resulted in successful gene-therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in Canavan children worldwide. Some of the groundbreaking work has led to trials for more commonly known disorders such as Parkinson's, MS and ALS. The goal is now the cure. In collaboration with several research labs and the biotech industry, the efforts and funding are moving research toward a stem cell clinical trial for Canavan children worldwide. Fore more go to: www.jacobscure.org.
— Source: Kara Warden
Vinny Warden, a first-grader at Tozer Primary School, was diagnosed with Canavan disease, a devastating genetic brain disease, in 2004 at 10 months of age. Vinny's family — parents Kara and Brian and older sister Kayla — are joining forces with Jacob's Cure to help it win the top prize of $250,000 from the Pepsi Refresh contest during the month of January.
According to a press release sent out on the contest, Jacob's Cure is a nonprofit organization founded by Jordana Holovach in 2000 to save her son, Jacob, who was diagnosed with Canavan at 6 months old. Children with Canavan disease, like Vinny and Jacob, become trapped in their bodies, develop seizures, lose their ability to see and swallow and die by the first decade of life if untreated.
The press release said that the research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene therapy or started the recommended treatments. Because of the research generated by Jacob's Cure, Vinny received experimental gene therapy when he was 2 years old.
People can vote for Jacob's Cure three times per day through Jan. 31 by visiting www.refresheverything.com/jacobscure via e-mail and Facebook, or by texting 105628 to 73774 (PEPSI) to vote by phone.
Voters also can follow on Facebook for daily voting reminders at: www.facebook.com/jacobscure or sign up to receive reminder e-mails at www.jacobscure.org/vote.
Vinny's sister, Kayla, said her little brother is very aware of his surroundings despite the disease. He uses a wheelchair but goes to school full time every day.
“He knows everything that we're saying and is very aware of everything around him,” said Kayla, 17, a senior at Windsor High School. “He just can't vocalize it with his words the same way as everybody else. He knows everything that's going on around him.”
Kayla, who plans to attend the University of Northern Colorado in the fall to study elementary education, said she reads to Vinny a lot. She also volunteers at Tozer.
“We have a lot of good times together,” she said. “He definitely is a pretty cool kid. He loves school. He loves going there every day. We play with his little dinosaurs. He loves people. He just loves life. We just spend all the time we have with him.”
Vinny's mother, Kara, said the $250,000 prize wouldn't go to any of the families, but it would be used for research. In addition to funding research, the press release said that a small portion of the grant will go to fund the upcoming Canavan Disease Research Summit & Family Conference, which will unite leading researchers in the field of white matter disease as well as many of the Canavan families from around the world. Since the cost of care for a Canavan child can be tremendous, many families are relying on Jacob's Cure winning the grant in order to attend the conference and help out with travel expenses, according to the press release.
“Jacob's Cure is the nonprofit organization that has applied for the grant,” Kara said. “Vinny was and still continues to be the only child that's ever been diagnosed with Canavan's Disease at Children's Hospital. They've never, ever had a case. There is no cure. Most children die within the first decade of life.”
Kara said Vinny is actually doing well.
“He's in first grade at Tozer. I think his favorite place to be is at school. He has friends that fight over who gets to sit by him at lunch,” Kara said. “He has a good network of people that care for him. He's nonverbal, but at this point, he's still very interactive with his surroundings and understands what you say to him. What happens in his brain is that the messages don't get to where they need to go.”
Kara said winning the $250,000 prize would be huge for the research element of the disease.
“Canavan Disease is considered an orphan disease, which basically means that there just are not enough children diagnosed with it. In the United States, there are less than 100 (kids with Canavan),” Kara said. “It gets very little research. It gets hardly any federal funding. The majority of funding for research comes from grants like this. It comes from parents who hold fundraisers. This amount of money would be huge.”
ABOUT JACOB'S CURE
Jacob's Cure is a 501c3 non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a fatal genetic brain disorder that
affects children at birth. Because of an enzyme deficiency, an acid in the brain accumulates to dangerous levels causing catastrophic effects to the
normal formation of myelin (white matter) in the brain that is responsible for transmitting nerve impulses from one part of the body to another. It is
the lack of white matter that leaves Canavan children incapable of performing the simplest functions. Even if they live to their full life expectancy – 3 to 10 years untreated – they become blind, paralyzed, prone to seizures, and increasingly lost to the world around them. Since its inception in September 2000, Jacob's Cure allocates money raised to research in gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. The efforts to date have resulted in successful gene-therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in Canavan children worldwide. Some of the groundbreaking work has led to trials for more commonly known disorders such as Parkinson's, MS and ALS. The goal is now the cure. In collaboration with several research labs and the biotech industry, the efforts and funding are moving research toward a stem cell clinical trial for Canavan children worldwide. Fore more go to: www.jacobscure.org.
— Source: Kara Warden
