Swimwear Designer Plucks Model With Special Needs

Disability Scoop (July 24, 2012)- In what’s believed to be a first, a Miami girl with Down syndrome is the new face of a major fashion designer’s ad campaign.

At 10-months-old, Valentina Guerrero is the cover girl for Spanish swimwear designer Dolores Cortés’ new U.S. catalog and will be featured in ads for the brand’s DC Kids line.

“People with Down syndrome are just as beautiful and deserve the same opportunities. I’m thrilled to have Valentina modeling for us,” Cortés said, according to Adweek.

In addition to featuring Guerrero in her advertisements, Cortés also brought the youngster out on the runway during Fashion Week in Miami last Friday.

The designer has pledged to donate 10 percent of profits from the swimwear collection to the Down Syndrome Association of Miami.

Guerrero is one of a handful of children with Down syndrome who are stealing the spotlight in recent times. Earlier this year, a 6-year-old from New Jersey with the chromosomal disorder made headlines when he appeared in a national Target circular. And last year, a British toddler with Down syndrome scored modeling deals for a global toy store and a clothing shop.

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Special Education Funding May Drop $900 Million

Disability Scoop (July 26, 2012)-The nation’s top education official is warning that special education programs across the country will face “devastating” budget cuts next year unless Congress acts.

Federal education spending for students with disabilities could be reduced by $900 million next year, U.S. Secretary of Education Arne Duncan told a U.S. Senate panel Wednesday.

That could translate to layoffs for over 10,000 teachers, aides and other staff who support the nation’s 6.6 million students with special needs, he said.

The cuts are expected to begin taking effect in January under a process known as sequestration which was triggered last year when Congress failed to reach a budget deal. Under the plan, education programs as well as most other federal initiatives will be subject to an across-the-board spending reduction of about 8 percent.

Unless Congress acts, special education cuts would impact schools starting in the fall of 2013, Duncan said.

“We all know that there are steps we can take so we don’t have to start down this path that puts so many critical services to students, families and communities at risk,” Duncan told senators. “As everyone knows, sequestration does not have to happen and should not happen.”

If the budget cuts go through as planned, federal spending on special education would fall to 14.5 percent, the lowest rate seen since 2001, according to an estimate from the Council for Exceptional Children, a national group that lobbies on behalf of special educators.

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Gene Therapy Holds Promise for Reversing Congenital Hearing Loss

ScienceDaily (July 25, 2012) — A new gene therapy approach can reverse hearing loss caused by a genetic defect in a mouse model of congenital deafness, according to a preclinical study published by Cell Press in the July 26 issue of the journal Neuron. The findings present a promising therapeutic avenue for potentially treating individuals who are born deaf.

"This is the first time that an inherited, genetic hearing loss has been successfully treated in laboratory mice, and as such represents an important milestone for treating genetic deafness in humans," says senior study author Lawrence Lustig of the University of California, San Francisco.

Hearing loss is one of the most common human sensory deficits, and it results from damage to hair cells in the inner ear. About half of the cases of congenital hearing loss are caused by genetic defects. However, the current treatment options -- hearing amplification devices and cochlear implants -- do not restore hearing to normal levels. Correcting the underlying genetic defects has the potential to fully restore hearing, but previous attempts to reverse hearing loss caused by genetic mutations have not been successful.

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Buddy Walk 2012

Walk Details: Columbia Buddy Walk

Walk Date:	Oct 28, 2012
Walk Time:	2:00 PM
Walk Name:	Columbia Buddy Walk
Address	Saluda Shoals Park 5605 Bush River Road
City:	Columbia
State:	SC
Zip Code	29212
Country	United States
Organizer Name	Seana McKee
E-Mail:	info@familyconnectionsc.org
Phone	(803) 252-0914
Website	www.familyconnectionSC.org

Walk Details: Family Connection Spartanburg Buddy Walk

Walk Date:	Oct 6, 2012
Walk Time:	1:00 PM
Walk Name:	Family Connection Spartanburg Buddy Walk
Address	355 Cedar Springs Road
City:	Spartanburg
State:	SC
Zip Code	29302
Country	United States
Organizer Name	Lisa Anderson
E-Mail:	lisaanderson@familyconnectionsc.org
Phone	864-585-5462
Website	www.familyconnectionsc.org

Making Sickle Cell Disease a Manageable Illness

New York Times (July 22, 2012)-On most days Giovanna Poli acts like a typical 12-year-old. She enjoys riding bikes with her brother, likes learning about the planets in science class and wants to be a pediatrician when she grows up.

But Giovanna, a brown-haired girl from West Palm Beach, Fla., also suffers from debilitating pain, recurring infections and organ damage. She was born with sickle cell disease, a genetic disorder with unpredictable complications that causes the red blood cells to assume an abnormal sickle shape, making it difficult for blood to flow through vessels and deliver oxygen throughout the body.

“I usually feel good,” she says. “But some days it hurts so much in my legs and arms. I can’t really walk, and I don’t like people touching me. If it’s really bad, I have to go to the hospital.”

Every year, nearly 1,000 babies in the United States are born with sickle cell disease, which is thought to affect about 100,000 Americans. Forty years ago, the outlook for babies born with the disease was pretty bleak; the average child lived to be only 14. However, over the last four decades, new treatments, early intervention techniques and newborn screening programs have helped turn this disease, which was once a death sentence, into a manageable chronic illness.

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Feds Redouble Disability Employment Efforts

Disability Scoop- (July 19, 2012)-Two federal agencies are joining forces in an effort to expand employment among those with intellectual and developmental disabilities.

Under an agreement reached this week, the U.S. Department of Labor’s Office of Disability Employment Policy and the Administration on Intellectual and Developmental Disabilities plan to work together to encourage broader adoption of so-called “employment first” policies.

The approach emphasizes integrated employment — where people with disabilities earn at least minimum wage working in environments where most employees are typically developing — as a first option for all individuals no matter how severe their needs.

The agencies plan to work together for at least the next two years to promote employment first by sharing information and resources, issuing joint policy statements and other efforts, according to the agreement.

Several states from Oregon to Delaware already have employment first policies or initiatives in place. By combining resources and working more closely together, officials at the Labor Department and the Administration on Intellectual and Developmental Disabilities say they hope to spur greater expansion.

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Mutations in Autism Susceptibility Gene Increase Risk in Boys

ScienceDaily (July 11, 2012) — Researchers at Emory University School of Medicine have identified five rare mutations in a single gene that appear to increase the chances that a boy will develop an autism spectrum disorder (ASD).

Mutations in the AFF2 gene, and other genes like it on the X chromosome, may explain why autism spectrum disorders affect four times as many boys as girls.

The mutations in AFF2 appeared in 2.5 percent (5 out of 202) boys with an ASD. Mutations in X chromosome genes only affect boys, who have one X chromosome. Girls have a second copy of the gene that can compensate.

The results were published July 5 in the journal Human Molecular Genetics.

"Our data suggest that AFF2 could be one of the major X-linked risk factors for ASD's," says senior author Michael Zwick, PhD, assistant professor of human genetics at Emory University School of Medicine.

The finding bolsters a growing consensus among geneticists that rare variants in many different genes contribute significantly to risk for autism spectrum disorders.

The mutations in the AFF2 gene probably do not cause ASDs all by themselves, Zwick says.

"We do not think that the variants we have identified are monogenic causes of autism," he says. "Our data does support the idea that this is an autism susceptibility gene."

In some situations, mutations in a single gene are enough by themselves to lead to a neurodevelopmental disorder with autistic features, such as fragile X syndrome or tuberous sclerosis complex. But these types of mutations are thought to account for a small number of ASD cases.

Recent large-scale genetic studies of autism spectrum disorders have identified several "rare variants" that sharply increase ASD risk. Scientists believe rare variants could explain up to 15 or 20 percent of ASD cases. However, until now no single variant has been found in more than one percent of ASD cases.

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Drug Shown to Improve Memory in Those With Down Syndrome

ScienceDaily (July 17, 2012) — Researchers at the University of Colorado School of Medicine have found a drug that boosts memory function in those with Down syndrome, a major milestone in the treatment of this genetic disorder that could significantly improve quality of life.

"Before now there had never been any positive results in attempts to improve cognitive abilities in persons with Down syndrome through medication," said Alberto Costa, MD, Ph.D., who led the four- year study at the CU School of Medicine. "This is the first time we have been able to move the needle at all and that means improvement is possible."

The study was published July 17 in the journal Translational Psychiatry.

Costa, an associate professor of medicine, and his colleagues studied 38 adolescents and young adults with Down syndrome. Half took the drug memantine, used to treat Alzheimer's disease, and the others took a placebo.

Costa's research team hypothesized that memantine, which improved memory in mice with Down syndrome, could increase test scores of young adults with the disorder in the area of spatial and episodic memory, functions associated with the hippocampus region of the brain.

Participants underwent a 16-week course of either memantine or a placebo while scientists compared the adaptive and cognitive function of the two groups.

While they found no major difference between the groups in adaptive and most measures of cognitive ability, researchers discovered that those taking memantine showed significant improvement in verbal episodic memory. One of the lowest functioning individuals in the study saw a ten-fold increase in memory skills.

"People who took the medicine and memorized long lists of words did significantly better than those who took the placebo," said Costa, a neuroscientist specializing in Down syndrome research. "This is a first step in a longer quest to see how we can improve the quality of life for those with Down syndrome."

Currently, there are drugs that treat the symptoms of medical conditions associated with Down syndrome but nothing to improve brain function.

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Disability Rights A Focus In Senate

Disability issues topped the agenda on Capitol Hill this week as members of the U.S. Senate convened two hearings focusing on the rights of those with special needs.

While a Senate panel considered ratification of the United Nations Convention on the Rights of Persons with Disabilities Thursday morning, a separate committee met in the same building to consider legislation that would regulate the use of restraint and seclusion in schools.

The hearings marked the first time that either issue was taken up by the body.

Consideration of the U.N. Convention comes nearly two months after President Barack Obama sent senators the international treaty, which calls for greater community access and a better standard of living for the estimated 650 million people around the world with disabilities.

Disability Scoop- (July 13, 2012)-Already 153 countries have signed the disability convention and 117 have ratified it, according to the U.N. While the United States signed on in 2009, Senate approval is needed to make participation official.

The convention has broad support with over 165 organizations urging ratification and the backing of a bipartisan group of senators, including Sen. Tom Harkin, D-Iowa, and Sen. John McCain, R-Ariz., both of whom spoke at the hearing.

“(The treaty) will provide the United States with a critical platform from which to urge other countries to improve equality of individuals with disabilities, including Americans who travel or live abroad, and including children with disabilities, whose plight is particularly neglected in many parts of the world,” Judith Heumann, special adviser for international disability rights at the U.S. Department of State told the Senate committee.

Protein Found in Spider Venom Could Treat Muscular Dystrophy

ScienceDaily (July 16, 2012) — While Spider-Man is capturing the imagination of theatergoers, real-life spider men in Upstate New York are working intently to save a young boy's life.

It all began in 2009, when Jeff Harvey, a stockbroker from the Buffalo suburbs, discovered that his grandson, JB, had Duchenne muscular dystrophy. The disease is fatal. It strikes only boys, causing their muscles to waste away.

Hoping to help his grandson, Harvey searched Google for promising muscular dystrophy treatments and, in a moment of serendipity, stumbled upon University at Buffalo scientist Frederick Sachs, PhD.

Sachs was a professor of physiology and biophysics who had been studying the medical benefits of venom. In the venom of the Chilean rose tarantula, he and his colleagues discovered a protein that held promise for keeping muscular dystrophy at bay. Specifically, the protein helped stop muscle cells from deteriorating.

Within months of getting in touch, Harvey and Sachs co-founded Tonus Therapeutics, a pharmaceutical company devoted to developing the protein as a drug. Though the treatment has yet to be tested in humans, it has helped dystrophic mice gain strength in preliminary experiments.

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Head Injuries and the Everyday Athlete

NY Times (July 11, 2012)- Much has been studied and reported, particularly in this newspaper, about the short-term effects of concussions on young athletes, as well as the potential longer-term outcomes for professional athletes who engage in high-level contact sports like football and ice hockey for many years, putting themselves at risk for multiple concussions and the lesser but still consequential subconcussive injuries.

But until recently, far less has been understood about the long-term implications, if any, of concussions experienced years ago by recreational athletes. Does a 55-year-old man who played high school football in the ’70s and perhaps grew dizzy or “had his bell rung” after a tackle or two need to worry about the state of his brain today, even if he never had a formal diagnosis of concussion? Or do I, because I bounced my head hard against the slopes several times while learning to snowboard 10 years ago?

The emerging answer, according to recent research, would seem to be a cautious “probably not,” although there may be reason to monitor how easily names and places come to mind.

For a study published in May in the journal Cerebral Cortex, researchers at the University of Montreal examined the brains of a group of healthy, middle-aged former athletes, all of whom had played contact sports in college about 30 years ago and some of whom had sustained concussions while doing so.

In the years since, the athletes had stopped competing but had remained physically active. None complained of failing memories or other symptoms of cognitive impairment — or at least, not more so than any group of 50- and 60-year-olds would be expected to complain.

The researchers scanned the volunteers’ brains using M.R.I. machines and automated measuring techniques that precisely determine the volume and other structural components of various brain segments. They also used separate scanning technology that looks at the metabolic health of particular neurons. Finally, they had volunteers complete tests of their long- and short-term memory, including their ability to dredge up specific words, a task that many of us who’ve reached middle age find daunting.

Child Prodigies, Autism Closely Linked

Disability Scoop (July 11, 2012)- When a team of researchers homed in on a group of eight wildly-talented child prodigies, they found that autism may have something to do with the children’s extraordinary abilities.

In a study published in the journal Intelligence this month, a research team from Yale University and Ohio State University report that autism appears to run in the family for many child prodigies.

For the study, the researchers hunted for commonalities among eight prodigies — those who displayed professional-level talents by the age of 10 in areas ranging from music to math. Though they are all famous, the study authors did not disclose the names of the whizzes they focused on, who ranged in age from 7 to 32 when they participated in the study.

Strikingly, three of the eight prodigies had an autism diagnosis themselves and four reported that they had first or second degree relatives with the disorder. What’s more, three of the prodigies had multiple family members with autism.

The study participants also all shared an unusually high affinity for attention to detail — a common trait of autism — when tested, but did not show higher levels of other characteristics of the disorder across the board, researchers found.

“The exceptional attention to detail combined with the over-representation of autism in the prodigies’ families suggests a link between prodigiousness and autism,” the researchers wrote. “The fact that the prodigies operate without many of the deficits commonly associated with the condition, however, suggests the presence of a modifier of some sort that prevents the child prodigies from displaying these deficits. The existence of such a modifier could have significant benefits for the autistic community.”

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PRO-Parents Webinar

PRO-Parents of SC /Webinars & Workshops Summer 2012

Workshop Updates PRO-Parents of SC will be doing several workshops at the 2012 Research to Practice which will be held at Lugoff Elgin Middle School 1244 Hwy 1 S. Lugoff SC 29078. Please call PRO-Parents of SC to register for these workshops 800-759-4776 or (803) 772 5688 Workshops at Research to Practice Response to Intervention and Individuals with Disabilties Education Act (IDEA) Workshop July 16, 2012 1:00pm-4:00pm Lugoff Elgin Middle School 1244 Hwy 1 S. Lugoff SC 29078 Susan Bruce and Mary Eaddy Research without Resources: OSEP Technical Assistance Network July 17, 2012 8:30am-12:00pm Lugoff Elgin Middle School 1244 Hwy 1 S. Lugoff SC 29078 Susan Bruce Individual Health Care Plans, 504 Plans and the Americans w/Disabilites Act (ADAA) July 18,2012 1:00pm-4:00pm Lugoff Elgin Middle School 1244 Hwy 1 S. Lugoff SC 29078 Mary Eaddy and Tanya M. Inabinet WEBINARS Transitioning Into Special Education; Early Intervention August 7, 2012 1:00pm-2:30pm Internet and phoneline required to participate Individual Education Program (IEP) August 9,2012 1:00pm-2:30pm Internet and phoneline required to participate Section 504, the ADA & Students w/Disabilities August 14,2012 1:00pm-2:30pm Internet and phoneline required to participate Individual Education Program (IEP) August 16,2012 1:00pm-2:30pm Internet and phoneline required to participate In This Issue Workshop Updates Webinar & Workshops Summer PRO-Parents of SC 652 Bush River Road Ste 203 Columbia, South Carolina 29210 803.772-5688 or 800.759.4776 www.proparents.org proparents@proparents.org rectanya@aol.com