Anyone who has traveled by air with a family member who has a developmental disability or ASD knows how traumatic it can be. This story really demonstrates some sensitivity to that problem and a growing desire to make it easier on us all.
Read here for the whole story which appeared on 11/16/10 in the Philadelphia Enquirer!
Children with autism practice traveling on 'mock' flights
By Linda Loyd
Inquirer Staff Writer
At 8 p.m. Saturday, Southwest Airlines Flight 2149 was poised to push back from the gate. Flight attendants gave fasten-seat-belt instructions, and First Officer Peter Hayes announced, "There's 25 minutes of flight time until we touch down in Philadelphia."
Capt. Todd Siems said the Boeing airliner was cruising at 37,000 feet. And after he turned off the seat-belt sign, the young passengers were served complimentary Sprite, cranberry-apple juice, and airplane-shaped crackers.
Flight 2149 never left the gate at Philadelphia International Airport, though. It was no ordinary flight, but rather a practice for children with autism and their families to become familiar with travel at the airport - bags, getting boarding passes, going through security, waiting at the gate, and sitting on the plane to experience the lights and sounds.
"I'm going to China, but we won't really," said an imaginative Gena Catanese, 5, of North Wales, accompanied by her parents and her sisters, Isabella, 6, and Emma, 3.
Just 18 months ago, Gena had a traumatic travel experience on vacation in Orlando, Fla. She expected to preboard the plane with her family, but the protocol was she could preboard only with one parent.
Gena became agitated and "overstimulated," said her mother, Melanie Catanese. "There was no way she was able to fly home that day."
After receiving a frantic call, Gena's pediatrician, Wendy Ross, at Albert Einstein Medical Center, phoned and faxed letters to the Orlando airport.
"I thought, 'This can never happen to one of my families again,' " said Ross, who sees children with learning disabilities, mental retardation, autism, and attention-deficit disorder. "Gena was saying she would never fly again. It was heartbreaking."
So Ross contacted Philadelphia airport and Rick Dempsey, head of the airport's Americans With Disabilities Act review committee.
"She wanted to bring a simulated airport experience for children with autism and their families," Dempsey said. "The committee thought it was a great idea. The [Transportation Security Administration] bought into it. We even got an airline, Southwest, to buy into the idea."
Since then, there have been three "mock" flights.
"We asked the crews if they would mind sticking around for 30 to 40 minutes and go through a mock turnaround on a flight, as if we were flying somewhere," said John Minor, Southwest's station manager here.
"We let them know that autistic children are very literal, so we don't want to say, 'We're flying to Disneyland,' " Minor said. "We just say, 'This is a test run.' "
Frontier Airlines plans a simulated flight for autistic children Dec. 11; US Airways Group has one planned for January. British Airways also has expressed interest.
In the spring, Ross trained 130 airport and airline employees on autism, which is diagnosed in one in 100 children annually.
"It's not something you outgrow, but if you get really good therapy, you can cope better, compensate better," Ross said. "My concern is that so many families do not go out into the community. It's unrealistic to think that these kids are going to be employable one day if they are not comfortable being in community venues as they grow up."
Ross went to Einstein four years ago from Children's Hospital in Boston and teamed up with psychologists, a speech and language pathologist, and occupational therapist Roger Ideishi from University of the Sciences to start programs for autistic children at the Please Touch Museum, Garden State Discovery Museum, Adventure Aquarium, and the Academy of Natural Sciences.
"Currently, we are consulting with the Smithsonian," she said.
Autistic children have difficulty with communication and socialization, and oversensitivity to sensory information and transition, Ross said. "New or unexpected things that have lights, sounds, movement can make them more likely to get upset or have a tantrum."
Her goal is to expand Philadelphia's program to airports nationwide, "everything from curb to cabin and back."
Sabra Townsend, whose son Brandon, 13, is autistic and was on the latest pretend flight, is part of a volunteer-run community-support group (Autism, Sharing & Parenting) that meets monthly at, alternately, the Center for Autism on Ford Road in Philadelphia and Community Behavioral Health, at Eighth and Market.
Townsend is helping Ross compile a list of families interested in practice flights. For information, call Einstein's department of developmental pediatrics at 215-456-6083.
After Saturday's training, Sheila and Derek Green of East Mount Airy said their son, Julian, 9, was ready to fly to Walt Disney World.
"He'll completely get it the next time he gets on an airplane," Sheila Green said. "We're going to Disney World as soon as possible!"
Read more: http://www.philly.com/inquirer/business/20101116_Children_with_autism_practice_traveling_on__mock__flights.html?viewAll=y#ixzz15TiA781b
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Tuesday, November 16, 2010
More Confirmation that Hope is Justified
I have copied and pasted this article that came to me today through my Google Alerts about research studies on ASD's. It brought tears to my eyes to read about such encouraging progress toward the possibility of real, permanent improvement for those affected by ASD's.
Researchers Use Skin Cells to Study Autism in Petri Dish
November 15, 2010 at 4:00 AM by Gant Team · Leave a Comment
By Barbara Kennedy, Penn State
A team of researchers has used stem cells taken from the skin of patients with Rett syndrome — the most physically disabling of the autism disorders — to replicate autism in the lab and to study how the disease affects brain cells. The team’s findings, to be published on Nov. 12 in the journal Cell, reveal disease-specific cellular defects, such as fewer functional connections between particular neurons, and demonstrate these defects are reversible. The results raise the hope that, one day, autism may become a treatable condition.
“The beauty and excitement of this new work is the demonstration that we can use patients’ skin to study autism,” said Gong Chen, associate professor of biology at Penn State and one of the study’s authors. Before this research, scientists had been limited to studying the brains of people with autistic-spectrum disorders via imaging technologies or with postmortem brain tissues. “The fully-functional neurons derived from skin are no different in their electrophysiology properties from neurons isolated from the brain. I believe this study, together with other recent studies, will provide hope for patient-specific stem-cell therapy in treating some diseases that currently are difficult to cure.”
Rett syndrome primarily affects girls, and the symptoms often become apparent just after they have learned to walk and say a few words. Affected children regress into an infant-like state, losing speech and motor skills, and developing stereotypical movements and autistic characteristics. “Mental disease, and particularly autism, still carry the stigma of bad parenting,” said Alysson Muotri, an assistant professor in the Department of Molecular and Cellular Medicine at the University of California, San Diego School of Medicine, and one of the study’s authors. “We show very clearly that autism is a biological disease that is caused by a developmental defect directly affecting brain cells.”
Because almost all cases of Rett syndrome are caused by a single mutation in the MeCP2 gene, the team took skin biopsies from patients carrying the mutated gene. By exposing the skin cells to four reprogramming factors, they “turned back the clock,” triggering the cells to look and act like embryonic stem cells. Known at this point as “induced pluripotent” stem cells, the Rett-derived cells were indistinguishable from their normal counterparts.
It was only after the team had patiently coaxed the stem cells to develop into fully functioning neurons — a process that can take up to several months — that they were able to discern differences between the two. Neurons carrying the MeCP2 mutations had smaller cell bodies, a reduced number of synapses and dendritic spines, and electrophysical defects, indicating that things start to go wrong early in development. “It is quite amazing that we can recapitulate a psychiatric disease in a Petri dish,” said author Fred Gage, a professor in the Salk Laboratory of Genetics and holder of the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Diseases. “Being able to study Rett neurons in a dish allows us to identify subtle alterations in the function of the neuronal circuitry that we never had access to before.”
The team also found that insulin-like growth factor 1 (IGF-1) — a hormone that has a role in regulating cell growth and neuronal development — was able to reverse some of the symptoms of Rett syndrome by restoring proper function to Rett neurons grown in culture. In summary, they found that IGF-1 treatment increased the number of synapses and spines, reverting the neurons to a closer-to-normal stage. This finding suggests that autism is not necessarily permanent and could be at least partially reversible. The new research also opens up the prospect of developing a drug treatment for Rett syndrome and other forms of autism. “Rett syndrome is sometimes considered a ‘Rosetta Stone’ that can help us to understand other developmental neurological disorders since it shares genetic links with other conditions such as autism and schizophrenia,” said author Maria Carol Marchetto, a postdoctoral researcher in the Laboratory of Genetics at the Salk Institute.
Along with Chen, Muotri, Gage, and Marchetto, Gage, and Marchetto, other researchers who contributed to the work include Cassiano Carromeu, Allan Acab, Gene Yeo at the University of California, San Diego; and Diana Yu and Yangling Mu at the Salk Institute for Biological Studies.
This work was supported by the Emerald Foundation Young Investigator Award, the National Institutes of Health through the NIH Director’s New Innovator Award Program, the California Institute for Regenerative Medicine, The Lookout Fund, and the Picower Foundation.
Researchers Use Skin Cells to Study Autism in Petri Dish
November 15, 2010 at 4:00 AM by Gant Team · Leave a Comment
By Barbara Kennedy, Penn State
A team of researchers has used stem cells taken from the skin of patients with Rett syndrome — the most physically disabling of the autism disorders — to replicate autism in the lab and to study how the disease affects brain cells. The team’s findings, to be published on Nov. 12 in the journal Cell, reveal disease-specific cellular defects, such as fewer functional connections between particular neurons, and demonstrate these defects are reversible. The results raise the hope that, one day, autism may become a treatable condition.
“The beauty and excitement of this new work is the demonstration that we can use patients’ skin to study autism,” said Gong Chen, associate professor of biology at Penn State and one of the study’s authors. Before this research, scientists had been limited to studying the brains of people with autistic-spectrum disorders via imaging technologies or with postmortem brain tissues. “The fully-functional neurons derived from skin are no different in their electrophysiology properties from neurons isolated from the brain. I believe this study, together with other recent studies, will provide hope for patient-specific stem-cell therapy in treating some diseases that currently are difficult to cure.”
Rett syndrome primarily affects girls, and the symptoms often become apparent just after they have learned to walk and say a few words. Affected children regress into an infant-like state, losing speech and motor skills, and developing stereotypical movements and autistic characteristics. “Mental disease, and particularly autism, still carry the stigma of bad parenting,” said Alysson Muotri, an assistant professor in the Department of Molecular and Cellular Medicine at the University of California, San Diego School of Medicine, and one of the study’s authors. “We show very clearly that autism is a biological disease that is caused by a developmental defect directly affecting brain cells.”
Because almost all cases of Rett syndrome are caused by a single mutation in the MeCP2 gene, the team took skin biopsies from patients carrying the mutated gene. By exposing the skin cells to four reprogramming factors, they “turned back the clock,” triggering the cells to look and act like embryonic stem cells. Known at this point as “induced pluripotent” stem cells, the Rett-derived cells were indistinguishable from their normal counterparts.
It was only after the team had patiently coaxed the stem cells to develop into fully functioning neurons — a process that can take up to several months — that they were able to discern differences between the two. Neurons carrying the MeCP2 mutations had smaller cell bodies, a reduced number of synapses and dendritic spines, and electrophysical defects, indicating that things start to go wrong early in development. “It is quite amazing that we can recapitulate a psychiatric disease in a Petri dish,” said author Fred Gage, a professor in the Salk Laboratory of Genetics and holder of the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Diseases. “Being able to study Rett neurons in a dish allows us to identify subtle alterations in the function of the neuronal circuitry that we never had access to before.”
The team also found that insulin-like growth factor 1 (IGF-1) — a hormone that has a role in regulating cell growth and neuronal development — was able to reverse some of the symptoms of Rett syndrome by restoring proper function to Rett neurons grown in culture. In summary, they found that IGF-1 treatment increased the number of synapses and spines, reverting the neurons to a closer-to-normal stage. This finding suggests that autism is not necessarily permanent and could be at least partially reversible. The new research also opens up the prospect of developing a drug treatment for Rett syndrome and other forms of autism. “Rett syndrome is sometimes considered a ‘Rosetta Stone’ that can help us to understand other developmental neurological disorders since it shares genetic links with other conditions such as autism and schizophrenia,” said author Maria Carol Marchetto, a postdoctoral researcher in the Laboratory of Genetics at the Salk Institute.
Along with Chen, Muotri, Gage, and Marchetto, Gage, and Marchetto, other researchers who contributed to the work include Cassiano Carromeu, Allan Acab, Gene Yeo at the University of California, San Diego; and Diana Yu and Yangling Mu at the Salk Institute for Biological Studies.
This work was supported by the Emerald Foundation Young Investigator Award, the National Institutes of Health through the NIH Director’s New Innovator Award Program, the California Institute for Regenerative Medicine, The Lookout Fund, and the Picower Foundation.
Monday, November 15, 2010
Jill's House
There is a new respite resource in Northern Virginia. It is called Jill's House and sounds very impressive from what I have heard and read. Unofficially, I have heard that they are working with other area churches to help set up other similar centers and outreach programs to families that include a disabled child.
Here is a Washington Post article about Jill's house:
copy and past this URL to read more:
http://www.washingtonpost.com/wp-dyn/content/article/2010/09/29/AR2010092903265.html
In addition, you can go to Jillshouse.org and visit the website where you can take a video-tour of the facility and listen to some of the families that are served. I was very impressed by the facility after watching the video-tour. It certainly is well-designed and welcoming and is open to families of any faith (or no religious affiliation at all).
I do not belong to the McLean Bible Church but know people who do. They have shared with me that the minister has a disabled daughter and she was the inspiration to begin an outreach program to help members attend services while the children received the care they needed. This respite center grew from that original outreach program. I hope the idea spreads!
Here is a Washington Post article about Jill's house:
copy and past this URL to read more:
http://www.washingtonpost.com/wp-dyn/content/article/2010/09/29/AR2010092903265.html
In addition, you can go to Jillshouse.org and visit the website where you can take a video-tour of the facility and listen to some of the families that are served. I was very impressed by the facility after watching the video-tour. It certainly is well-designed and welcoming and is open to families of any faith (or no religious affiliation at all).
I do not belong to the McLean Bible Church but know people who do. They have shared with me that the minister has a disabled daughter and she was the inspiration to begin an outreach program to help members attend services while the children received the care they needed. This respite center grew from that original outreach program. I hope the idea spreads!
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