The Script of Your Life is Not Written Yet- Michael J. Fox

Disabled World (Jan. 25, 2010)- "Back to the Future" star and Parkinson's activist Michael J. Fox offered life lessons to a crowd of over 2,000 in an inspiring keynote address at the Advertising Specialty Institute's national trade show in Orlando Tuesday.

With humor, wit and honesty, Fox moved and encouraged attendees. "The script of your life is not written yet," he said, stressing his fight with Parkinson's disease has been an opportunity to help others. "Life is about choices and the only choice I don't have is about Parkinson's. Everything else is up to me."

Drawing on his natural talent for comedy, Fox told the crowd about his start in acting while he was growing up in British Columbia, Canada. "I had a great drama teacher in high school," Fox said. "He used to say to us that we're all here because we're not all there." Fox moved to Hollywood to pursue his acting dreams but admitted he quickly became poor and frustrated and was days away from going back to Canada to work in construction. "My apartment was so small I had to do my dishes in the shower," he joked.

Fox finally got his first big break when the producers of the show "Family Ties" called. "I didn't have a phone, so I closed the deal on a pay phone outside a chicken joint," Fox said. In short time, Fox was a star, but at age 29 his life would change yet again. "One day there was a tremor in my pinky finger," he said. "Later a doctor sat me down and told me I had Parkinson's. I didn't want to believe it."

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Preschool Kids Know What They Like: Salt, Sugar and Fat

ScienceDaily (Jan. 26, 2011) — "A child's taste preferences begin at home and most often involve salt, sugar and fat. And, researchers say, young kids learn quickly what brands deliver the goods.In a study of preschoolers ages 3 to 5, involving two separate experiments, researchers found that salt, sugar and fat are what kids most prefer -- and that these children already could equate their taste preferences to brand-name fast-food and soda products.
In a world where salt, sugar and fat have been repeatedly linked to obesity, waiting for children to begin school to learn how to make wise food choices is a poor decision, says T. Bettina Cornwell, a professor of marketing in the University of Oregon Lundquist College of Business. Children even are turning to condiments to add these flavors -- and with them calories -- to be sure that the foods they eat match their taste preferences.
"Our findings present a public policy message," Cornwell said. "If we want to pursue intervention, we probably need to start earlier." Parents, she said, need to seriously consider the types of foods they expose their young children to at home and in restaurants. "Repeated exposure builds taste preferences."

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First Drug to Treat Fragile X?

ScienceDaily (Jan. 9, 2011) — "The first drug to treat the underlying disorder instead of the symptoms of Fragile X, the most common cause of inherited intellectual disability, shows some promise, according to a new study published in the January issue of Science Translational Medicine. Researchers from Rush University Medical Center helped design the study and are now participating in the larger follow-up clinical trial.The data from the early trial of 30 Fragile X patients, found the drug, called AFQ056, made by Novartis Pharmaceuticals, helped improve symptoms in some patients. Patients who had the best response have a kind of "fingerprint" in their DNA that could act as a marker to determine who should get treatment.
"This is an exciting development. It is the first time we have a treatment targeted to the underlying disorder, as opposed to supportive treatment of the behavioral symptoms, in a developmental brain disorder causing intellectual disability. This drug could be a model for treatment of other disorders such as autism," said pediatric neurologist Dr. Elizabeth Berry-Kravis, a study author and director of the Fragile X Clinic and Research Program and the Fragile X-Associated Disorders Program at Rush."
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Americans Living with Disability and Their Technology Profile

Pew Internet (Jan. 21, 2011) According to a national survey conducted in September 2010, 27% of American adults live with a disability that interferes with activities of daily living, including:

* 15% of American adults who say they have serious difficulty walking or climbing stairs.
* 11% of American adults who say that, because of a physical, mental, or emotional condition, they have serious difficulty concentrating, remembering, or making decisions.
* 9% of American adults who say they have serious difficulty hearing.
* 8% of American adults who say that, because of a physical, mental, or emotional condition, they have difficulty doing errands alone such as visiting a doctor’s office or shopping.
* 7% of American adults who say they are blind or have serious difficulty seeing, even when wearing glasses.
* 3% of American adults who say they have trouble dressing or bathing.

Americans living with disability are more likely than other adults to live in lower-income households: 46% of adults with a disability live in households with $30,000 or less in annual income, compared with 26% of adults who report no disabilities and live in households with that level of income.

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The ADHD Basics from A-Z

The ADHD Basics from A-Z
Presented by
Chris Zeigler Dendy, M.S.

February 11, 2011
9:00 am - 3:30 pm
Glenforest School
1041 Harbor Drive
West Columbia, SC

This conference will focus on practical and effective intervention strategies and assistive technology for addressing the profound impact Attention Deficit/Hyperactivity Disorder and executive function difficulties have on a student’s academic performance. Parents and educators will find that use of these strategies and assistive technology items could be helpful to students with other types of disabilities.

Participants will:
■Familiarize themselves with key components of executive function.
■Discuss challenging behaviors, disorganization, opposition, and school performance.
■Identify common learning problems students with AD / HD often experience in school.
■Identify specific intervention strategies to cope with AD / HD and other learning difficulties.

For more information contact Pro Parents at (800)759-4776 (toll-free) or (803) 772-5688.

To find the conference agenda and to register online, click on the title above.

Kelly Doyle Book Review

"No Time for Me" written by John M. Barrett is about a kid named Jimmy who feels left out of his family. He has a little sister named Kim and his parents. They both have jobs. They are lawyers. His parents are so busy with their jobs that they didn’t know that Jimmy was upset because he couldn’t see his parents that much. So that’s why he feels left out of his family. That’s why the book is called "No Time for Me." I loved this book. It was really good. The book made me cry because a long time ago when I was a kid, teenager and an adult I felt left out of my family. But I think everybody feels that way sometimes.

One More Step Towards the End of Recessive Diseases

Genetic Future (Jan. 20, 2011)- "In the last century infant mortality has declined precipitously in the Western world, thanks in large part to the development of antibiotics and vaccination. Yet as the suffering and death from infectious disease has reduced, the burden from genetic disease has become proportionately greater: currently around 20% of all infant deaths in developed countries are a result of inherited Mendelian (single-gene) disorders.

What can be done to reduce this burden? Increasingly sophisticated methods for detecting disease in embryos during pregnancy will help, and these have recently taken another step forward with the development of accurate, non-invasive methods based on analysing foetal DNA in the blood of pregnant mothers (an article in the BMJ this week demonstrates the feasibility of this approach for a non-Mendelian disease, Down syndrome; and the same group showed late last year that this approach can also be applied to effectively any known disease-causing mutation). Yet these approaches detect disease after pregnancy has already begun.

Disease mutations can also be detected in embryos prior to implantation, for prospective parents undergoing IVF. But IVF remains an expensive, arduous and invasive procedure, and thus a weapon of last resort for most parents-in-waiting; as Armand Leroi notes drily in an exceptional 2006 article in EMBO Reports: “nature has contrived a cheap, easy and enjoyable way to conceive a child; IVF is none of these things.” (While Leroi goes on to argue that the challenges of IVF are less severe for young couples with no fertility problems, it still seems fairly implausible that this will become the default mode of reproduction in the near future.)

However, for some classes of Mendelian disease it’s possible to move the screening one step back. Recessive diseases are insidious things. The mutations that cause them lurk undetected – each of us carry perhaps 5 to 10 of them – as their carriers are protected by the presence of a healthy second copy of the affected gene. These mutations can thus wait silently for generation after generation, until a carrier is unlucky enough to fall for someone who carries the same mutation, or another mutation in the same gene. The children of such a couple will each have a 25% chance of inheriting one damaged copy of the gene from each parent and thus developing the disease."

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New Genetic Test Screens Would-Be Parents

National Public Radio (January 13, 2011)- A newly developed test could screen would-be parents for hundreds of different disease genes, to make sure they are not passed on to any future children.

The test's makers say it should cost less than $400 and that routinely offering it to prospective parents could someday eliminate many deadly childhood diseases.

"We definitely want it to be pre-pregnancy. We do want it to be couples," says Stephen Kingsmore, a physician-researcher at Children's Mercy Hospital in Kansas City, Mo., who led the team that developed this new test. "I think it's going to be a personal decision, whether a couple wants to be tested."

The inspiration for this new test came from Craig and Charlotte Benson, of Austin, Texas. In 2008, their daughter Christiane was diagnosed with Batten disease, a rare neurodegenerative disorder that currently has no cure. It progresses from vision loss to memory problems and seizures, and eventually death.

"Both her mom and I carry a gene mutation, a single gene mutation," explains Craig Benson. He and his wife didn't know they were carriers before they had children — indeed, they'd never heard of Batten disease."

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Critical Link Between Down Syndrome and Alzheimer's Disease Discovered

ScienceDaily (Jan. 12, 2011) — "Researchers at the University of British Columbia and Vancouver Coastal Health Research Institute have discovered that the genetic mechanism which destroys brain cells is responsible for early development of Alzheimer's Disease in people with Down Syndrome and for development of Alzheimer's Disease in general population -- providing a potential new target for drugs that could forestall dementia in people with either condition.
The research, led by Dr. Weihong Song, Canada Research Chair in Alzheimer's Disease and a professor of psychiatry in the UBC Faculty of Medicine, found that excessive production of a protein, called Regulator of Calcineurin 1 (RCAN1), sets in motion a chain reaction that kills neurons in the hippocampus and cortex in people with Down Syndrome and Alzheimer's Disease.
The findings were published online recently in the Journal of Biological Chemistry.
"Neuronal death is the primary reason for the memory loss and other cognitive impairments of Alzheimer's Disease, and it's the main reason people with Down Syndrome develop Alzheimer's Disease long before most people, usually in their 30s," says Song, a member of the Brain Research Centre at UBC and the Vancouver Coastal Health Research Institute (VCHRI), and Director of Townsend Family Laboratories at UBC. "By looking for the common elements of both conditions, we were able to pinpoint how and why the deterioration occurs."
Alzheimer's Disease (AD) is the most common form of dementia, which usually affects people over age 60. The Alzheimer Society of Canada estimates that the disease affects more than 238,000 Canadians, and that by 2031 about 750,000 Canadians will suffer from AD and related dementias.
Down Syndrome (DS) is a congenital anomaly that includes developmental delays and learning disabilities. A 2002 report by the Public Health Agency of Canada said that about one in 800 Canadian newborns have the condition; the average lifespan for those with Down Syndrome is 49 years. People with DS have an extra copy of the gene that produces RCAN1, thus leading to its excess production. The resulting neuronal death -- with symptoms that mirror those of AD patients -- is one of the prime reasons for the shortened lifespan of people with DS."

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Couch Potatoes Beware: Too Much Time Spent Watching TV Is Harmful to Heart Health

ScienceDaily (Jan. 11, 2011) — "Spending too much leisure time in front of a TV or computer screen appears to dramatically increase the risk for heart disease and premature death from any cause, perhaps regardless of how much exercise one gets, according to a new study published in the January 18, 2011, issue of the Journal of the American College of Cardiology.
Data show that compared to people who spend less than two hours each day on screen-based entertainment like watching TV, using the computer or playing video games, those who devote more than four hours to these activities are more than twice as likely to have a major cardiac event that involves hospitalization, death or both.
The study -- the first to examine the association between screen time and non-fatal as well as fatal cardiovascular events -- also suggests metabolic factors and inflammation may partly explain the link between prolonged sitting and the risks to heart health.
"People who spend excessive amounts of time in front of a screen -- primarily watching TV -- are more likely to die of any cause and suffer heart-related problems," said Emmanuel Stamatakis, PhD, MSc, Department of Epidemiology and Public Health, University College London, United Kingdom. "Our analysis suggests that two or more hours of screen time each day may place someone at greater risk for a cardiac event."

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Journal Claims Profit Motive Helped Fuel Autism-Vaccine Scare

NPR.org - January 12, 2011 by Scott Hensley

"In the second installment in a series for the BMJ, investigative journalist Brian Deer lays out evidence that a search for profits helped drive medical work that asserted a vaccine against measles, mumps and rubella was linked to autism.

In the first piece for the British Medical Journal, Deer asserted the data behind a 1998 study in the Lancet, withdrawn last year, were worse than wrong — they had been manipulated.


Now Deer writes in more detail about Dr. Andrew Wakefield's big plans to make money from the work. There was support for the research from a lawyer with ambitions to launch product liability suits against vaccine makers. But other business ideas ranged from a company that could commercialize new clinical tests to development of a modified measles vaccine."

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SC AT Exchange

Below are new listings on our SC AT Exchange. Please share this information with anyone who might benefit.

You must login (or create a new account if you are a new user) to see the contact information. If you have already logged in (or at least tried to) and still have questions please email Catherine Leigh Graham of call her at 803-434-3189. If you can’t get Catherine, email Janet Jendron or call her at (803) 446-2566.

Please visit the AT Exchange web page and find the contact information/details for these and other items. The Assistive Technology Exchange website includes many items listed for sale or free, as well as items that are needed. These items are not located at any one place or warehouse. These are all items that are currently owned by someone else who is willing to sell at a reduced price or even for free in some cases.

If you have questions, please don’t respond to this email, but contact BOTH Janet.Jendron@uscmed.sc.edu AND Catherine.Graham@usc.med.sc.edu

Note that we can try to help facilitate transportation of equipment, if that's needed. We can't promise anything, but it's always amazing who can step in to help!

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Items For Sale

Item 444 - Glasslike Shower Doors. $100. Trackless, light weight shower doors. Enclose the tub with these accessible doors, no track to sit on, magnetic closures, never installed. Two sets with the hardware are still in the box. Located in Hilton Head. Buyer pays shipping or can arrange for pick up (AT Exchange Administrators might help facilitate transportation).

Item 437 Hi-Lo Chair. $100. Blue with space theme. Use tall or short with chest support, leg pomell, waist strap, foot strap and removable tray. For use with child ages 2-6. At table height or on floor. Located in Lexington SC

Items for Free

Item 435 - Child's Stander. Dark wood finished child's stander, for elevation and support. Free. Pickup required. Located in Bluffton SC

Items Needed

Item 442 - Wheelchair Accessible Van. Needed soon to make it possible for a young woman to start her master's program.

Item 441 - Child's hospital bed / safe bed my 2 year old daughter who is medically fragile and unable to sleep in regular bed.

Item 440 - Pediatric Hoya Lift for a child who weighs 42 pounds.

Item 439 - Voice amplifier. Needs to be hands-free as Hospice patient no longer has use of hands.

Item 438 - wheelchair. need over-sized wheelchair for amputee.

NOTE: Click on the title above to go to the web site.