New Options For People With PKU

ScienceDaily (Apr. 7, 2009) — For people with the genetic condition known as phenylketonuria (PKU), diet is a constant struggle. They can eat virtually no protein, and instead get their daily dose of this key macronutrient by drinking a bitter-tasting formula of amino acids. Yet drink it they must; deviating from this strict dietary regimen puts them at risk of developing permanent neurological damage.

In the near future, fortunately, a better option may become available.

In April, a team of University of Wisconsin-Madison researchers will publish the second of two key papers showing that a unique protein derived from whey — known as glycomacropeptide, or GMP — is safe for people with PKU to eat. 

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Young Adults At Future Risk Of Alzheimer's Have Different Brain Activity, Says Study

ScienceDaily (Apr. 6, 2009) — Young adults with a genetic variant that raises their risk of developing Alzheimer's Disease show changes in their brain activity decades before any symptoms might arise, according to a new brain imaging study by scientists from the University of Oxford and Imperial College London. The results may support the idea that the brain's memory function may gradually wear itself out in those who go on to develop Alzheimer's.

The research, published in the journal Proceedings of the National Academy of Sciences, provides clues as to why certain people develop Alzheimer's Disease (AD) and it may be a step towards a diagnostic test that identifies individuals at risk. The degenerative condition is the most common cause of dementia and it affects around 417,000 people in the UK.

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Please join the Family Connection and friends for:

The Grand Opening of 

The Connection

Mashburn Family Center

An education, information, and support center for families of children with special needs

Thursday, April 16

Ribbon-cutting at 11 a.m.

followed by a tour and reception

2712 Middleburg Dr., Suite 103B

Columbia, South Carolina 29204

We are especially gratefule to the following: United Way of the Midlands, Mashburn Construction Company, Blue Cross Blue Shield of South Carolinsa, The Junior League of Columbia, Hood Construction, USC Medical School Center for Disability Resources Library, Becky Patrick, Mcwstart, Derick Plumbing, EF Martin Mechanical, Powell Electric, Echara Painting, Collins & Wright, Palmetto Metal, Mill Creek Greenhouses, Brabham Fence Company, Souper Bowl of Caring, and Jeffers-McGill, LLC

When a community comes together, anything is possible!

Providing Information and Support to families with children with special needs

Save The Dates:

April 16 - Grand Opening of The Connection, ceremony at 11 a.m.

April 26 - Benefit Dinner at the Columbia Museum of Art

2009 Family Voices National Conference

Looking Forward, Keeping Families at the Center of Children's Health Care

May 3-5, 2009, Washington, DC

To see Family Connection website, please click link above

Touch Helps Make The Connection Between Sight And Hearing

ScienceDaily (Mar. 25, 2009) — The sense of touch allows us to make a better connection between sight and hearing and therefore helps adults to learn to read. This is what has just been shown by the team of Édouard Gentaz, CNRS researcher at the Laboratoire de Psychologie et Neurocognition in Grenoble (CNRS/Université Pierre Mendès France de Grenoble/Université de Savoie).

These results, published March 16th in the journal PloS One, should improve learning methods, both for children learning to read and adults learning foreign languages.

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Family Therapy May Help The Depressed Patient

ScienceDaily (Apr. 8, 2009) — A study published in the current issue of Psychotherapy and Psychosomatics suggests that single-family and multi-family therapy may benefit hospitalized patients with major depression, and may help the partners of the patients to become aware of the patient's improvement more quickly.

Family-based interventions have been shown to be effective in the treatment of depression, but they have seldom been studied in hospitalized depressed patients.

This study assesses the value of the additional use of single-family or multi-family group therapy within this patient population.

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Teaching Autistic Teens To Make Friends

ScienceDaily (Apr. 8, 2009) — During the first week of class, the teens' eyes were downcast, their responses were mumbled and eye contact was almost nonexistent. By Week 12, though, these same kids were talkative, responsive and engaged.

That's the result of a special class designed at UCLA to help teens with autism spectrum disorders (ASD) learn to interact appropriately with their peers. ASD includes a range of pervasive developmental disorders characterized by problems with communication and socialization; it's estimated that one in 150 children born in the United States has some form of ASD.

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FAMILY CONNECTION SPRING BENEFIT

ANNUAL SPRING BENEFIT AND AUCTION

Please Join us Sunday, April 26th

for

Cocktails, Hors'Doeuvres & Dancing

With Music by the O'Kayslons

at

Columbia Museum of Art

Hampton at Main Street

$75/per person 6 P.M. Spring Attire RSVP by April 20th

Celebrating Abilities

An Evening of Jazz And Art

Friday, May 1, 2009

6:00 p.m. ~ 9:00 p.m.

Nelson Mullins

The Meridian Building, 17th Floor

1320 Main Street, Columbia, South Carolina

Capital Jazz ~ Silent and Live Auction

Wine ~ Hours d'Oeuvres ~ Dessert & Coffee Bar

P & A Annual Awards

~50.00 Per Person~

For More Information, call 803-782-0639 or 1-866-275-7273

A Evening and a day with the Office for Civil Rights

Sponsored By PRO-Parents of

_______________________________________

Alexander Choi, Attorney,

U.S. Department of Education

Office for Civil Rights

Washington, DC

Evening Session

April 21, 2009

5:30pm-8:30pm

PRO-Parents of SC Office

652 Bush River Road Ste 203

Columbia SC 29210

(In person and conference call)

dial in 1-877-275-6071 access code 9138031

And/Or

Morning Session/In person only

April 22, 2009

9:00am-12:00pm

William S. Hall Psychiatric Institute

1800 Coloinal Drive

Columbia SC 29203

Please call PRO-Parents of SC to register

803.772-5688 or 800.759.4776

FREE WORKSHOP & OPEN TO THE PUBLIC

Dealing With Dwarfism

ScienceDaily (Apr. 1, 2009) — A popular cable reality television show, Little People, Big World, focuses on the daily lives of short stature individuals. This series bring achondroplasia, the most common form of dwarfism, into the spotlight. According to a literature review published in the April 2009 issue of the Journal of the American Academy of Orthopaedic Surgeons (JAAOS), treating patients with dwarfism is an extremely complex process. Orthopaedic surgeons and others caring for people with this disorder should be aware of its many manifestations.

For example, limb lengthening treatments for those living with achondroplasia have been met with mixed results.

"Not only is limb lengthening a huge time commitment for the families involved, but children with achondroplasia are taken out of the environment where they play, interact and have fun to be placed in treatment for several years," said study co-author Michael C. Ain, MD, associate professor, Department of Orthopaedic Surgery and Neurosurgery, Johns Hopkins Hospital, Baltimore, Maryland.

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Silicone Ear Looks Just Like The Real Thing

ScienceDaily (Mar. 19, 2009) — To look at Matthew Houdek, you could never tell he was born with virtually no left ear. A surgery at Loyola University Health System made it possible for Houdek to be fitted with a prosthetic ear that looks just like the real thing.

Ear-nose-throat surgeon Dr. Sam Marzo implanted three small metal screws in the side of Houdek's head. Each screw is fitted with a magnet, and magnetic attraction holds the prosthetic ear in place.

It takes only a few seconds for Houdek to put his prosthetic ear on in the morning and take it off when he showers or goes to bed. It doesn't fall off, and it's much more convenient than prosthetic ears that are attached with adhesive.

"I'm extremely happy with it," said Houdek, 25, who lives in Chicago. "It turned out better than I expected."

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Quinn Bradlee, Son of 'Post' Power Duo, Writes of Disabilities

USA Today (March 31, 2009) --By Craig Wilson -- WASHINGTON — Quinn Bradlee was born with more than a few advantages. He has famous parents, former Washington Post executive editor Ben Bradlee and journalist Sally Quinn, and grew up in a historic mansion here in tony Georgetown. An ivy-covered life of fancy New England prep schools and summer houses were his for the taking.
But he had a hole in his heart at birth. And that was only the beginning.

After years of medical problems, Bradlee, 26, was diagnosed with velocardiofacial syndrome (VCFS), a genetic disorder. Harvard, the alma mater of his father, grandfather and great-grandfather, was not in his future.

Not that it has slowed him down.

He has written a refreshingly honest memoir, A Different Life: Growing Up Learning Disabled and Other Adventures (Public Affairs, $24.95), in which he talks about everything from his overprotective and hard-charging mother — "she can be a little high-strung at times" — to feeling as if he's always fighting an uphill battle.

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Autism Skews Developing Brain With Synchronous Motion And Sound

ScienceDaily (Mar. 30, 2009) — Individuals with autism spectrum disorders (ASD) tend to stare at people's mouths rather than their eyes. Now, an NIH-funded study in 2-year-olds with the social deficit disorder suggests why they might find mouths so attractive: lip-sync—the exact match of lip motion and speech sound.

Such audiovisual synchrony preoccupied toddlers who have autism, while their unaffected peers focused on socially meaningful movements of the human body, such as gestures and facial expressions.

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