Research partners claim they’re making leaps and bounds towards understanding autism
13 September, 2011 - English, The Autism News
The Autism News | English
OTTAWA — David Patchell-Evans says he felt powerless as he watched his daughter, Kilee, turn “literally overnight” from a sweet, friendly toddler into a three-year-old who would bite her little sister till she bled, who would wake up every night screaming, and who had suddenly lost all her vocabulary.
“You don’t know what to do — the behaviour is so mystifying,” he said. “It’s like you’re in the middle of a whirlpool and you feel like you’re sinking.”
The doctors diagnosed Kilee with autism, but Patchell-Evans said they couldn’t help her or offer much advice.
After years of “just coping,” Patchell-Evans, the owner of GoodLife Fitness Canada and a self-described “entrepreneur to the core,” started looking for his own answers.
In 2003, a friend introduced him to London, Ont.-based neuroscientist Derrick MacFabe, who had an as-yet untested theory about the cause of autism, which affects one in 90 Canadians.
After repeated unsuccessful attempts at getting funding through traditional government sources, MacFabe was searching for help.
The scientist and the CEO spent an afternoon discussing MacFabe’s theories, and Patchell-Evans’ experience with Kilee.
Patchell-Evans said MacFabe seemed honest about the fact he didn’t have the answers — “but he was asking the right questions.”
After a few hours, the two shook hands, as Patchell-Evans promised to fund MacFabe’s research, on two conditions: the research had to be conducted openly, with as much collaboration with other scientists as possible, and the resulting cure or treatment would be made widely available to anyone who needed it, at a fair price.
Since 2003, Patchell-Evans has given $4 million to the Kilee Patchell-Evans Autism Research Group (KPEARG), and has raised millions more through his friends and contacts in the business world.
Now the partners, and many of their peers, say they’re making leaps and bounds toward figuring out what causes autism, with a funding model that tests conventional thinking on scientific research.
MacFabe’s group — which is based at the University of Western Ontario in London — is getting ready to release more evidence that the overuse of antibiotics, which alters the balance of bacteria in the human gut, could create the conditions for autism in susceptible groups.
MacFabe uses his position at the university to make contact with autism researchers in a variety of specialties all over the world, hoping a collaboration in which all the information is immediately shared will lead to a faster answer to all of their questions — and a faster cure for autism.
Researchers at Harvard, UCLA, Queen’s, and universities in Sweden and Saudi Arabia all contribute their findings to the multi-disciplinary approach MacFabe insists will find the key to this disease.
Laurie Mawlam, executive director of Autism Canada and mother of an autistic child, is convinced.
She said the group is the only recipient of funding from Autism Canada because it is the first research that gives parents real hope that a cure is possible, and it’s the first time she said she feels the scientists are listening.
“It’s really groundbreaking work,” she said.
The National Science and Engineering Research Council of Canada named MacFabe’s university team and its research as one of the top 50 scientific discoveries in Canada in 2007, and he and his colleagues have published their work in peer-reviewed scientific publications such as Behavioural Brain Research, American Journal of Biochemistry and Biotechnology, and Neuropharmacology.
In a research field dominated by geneticists, MacFabe said he started wondering how autism affects the body and how the environment affects the disease.
“A key cornerstone of medicine is the history; listening to people, hearing their stories and then trying to figure out how it all connects to the disease,” he said. “Many of the parents of my patients felt they weren’t being listened to by their physicians.”
The Vancouver Sun
13 September, 2011 - English, The Autism News
The Autism News | English
OTTAWA — David Patchell-Evans says he felt powerless as he watched his daughter, Kilee, turn “literally overnight” from a sweet, friendly toddler into a three-year-old who would bite her little sister till she bled, who would wake up every night screaming, and who had suddenly lost all her vocabulary.
“You don’t know what to do — the behaviour is so mystifying,” he said. “It’s like you’re in the middle of a whirlpool and you feel like you’re sinking.”
The doctors diagnosed Kilee with autism, but Patchell-Evans said they couldn’t help her or offer much advice.
After years of “just coping,” Patchell-Evans, the owner of GoodLife Fitness Canada and a self-described “entrepreneur to the core,” started looking for his own answers.
In 2003, a friend introduced him to London, Ont.-based neuroscientist Derrick MacFabe, who had an as-yet untested theory about the cause of autism, which affects one in 90 Canadians.
After repeated unsuccessful attempts at getting funding through traditional government sources, MacFabe was searching for help.
The scientist and the CEO spent an afternoon discussing MacFabe’s theories, and Patchell-Evans’ experience with Kilee.
Patchell-Evans said MacFabe seemed honest about the fact he didn’t have the answers — “but he was asking the right questions.”
After a few hours, the two shook hands, as Patchell-Evans promised to fund MacFabe’s research, on two conditions: the research had to be conducted openly, with as much collaboration with other scientists as possible, and the resulting cure or treatment would be made widely available to anyone who needed it, at a fair price.
Since 2003, Patchell-Evans has given $4 million to the Kilee Patchell-Evans Autism Research Group (KPEARG), and has raised millions more through his friends and contacts in the business world.
Now the partners, and many of their peers, say they’re making leaps and bounds toward figuring out what causes autism, with a funding model that tests conventional thinking on scientific research.
MacFabe’s group — which is based at the University of Western Ontario in London — is getting ready to release more evidence that the overuse of antibiotics, which alters the balance of bacteria in the human gut, could create the conditions for autism in susceptible groups.
MacFabe uses his position at the university to make contact with autism researchers in a variety of specialties all over the world, hoping a collaboration in which all the information is immediately shared will lead to a faster answer to all of their questions — and a faster cure for autism.
Researchers at Harvard, UCLA, Queen’s, and universities in Sweden and Saudi Arabia all contribute their findings to the multi-disciplinary approach MacFabe insists will find the key to this disease.
Laurie Mawlam, executive director of Autism Canada and mother of an autistic child, is convinced.
She said the group is the only recipient of funding from Autism Canada because it is the first research that gives parents real hope that a cure is possible, and it’s the first time she said she feels the scientists are listening.
“It’s really groundbreaking work,” she said.
The National Science and Engineering Research Council of Canada named MacFabe’s university team and its research as one of the top 50 scientific discoveries in Canada in 2007, and he and his colleagues have published their work in peer-reviewed scientific publications such as Behavioural Brain Research, American Journal of Biochemistry and Biotechnology, and Neuropharmacology.
In a research field dominated by geneticists, MacFabe said he started wondering how autism affects the body and how the environment affects the disease.
“A key cornerstone of medicine is the history; listening to people, hearing their stories and then trying to figure out how it all connects to the disease,” he said. “Many of the parents of my patients felt they weren’t being listened to by their physicians.”
The Vancouver Sun
