PARRY-ROMBERG SYNDROME: NO CURE YET

One of the most depressing aspects of Parry-Romberg Syndrome is the fact that people familiar with this rare, yet-to-be-cured disease are almost as hard to find as those who have it. PRS victims account for fewer than 200,000 of America’s 300 million plus citizens.

Consequently very little effort is being made to fund PRS research, or even to let people know that the disease exists. Exceptions are a hard-working group in Carmel, Indiana called Parry-Romberg Syndrome Resource, Inc. and, as of this writing, the Feds. Specifically the Committee on Health, Education, Labor and Pensions.

In typical bureaucratic style, this committee is now studying a bill (H.R. 2408) that has already been passed by the House of Representatives which, when approved by the Senate, would make research funds covering PRS accessible.

A VERY SPECIAL PATIENT

Meanwhile, waiting for a reason to hope are heart-broken families and friends of PRS victims who are all too aware of the destructive power of this disease—both physical and psychological. Victims like my dear friend, Owen.

Right now this lovable, outgoing, super smart six-year-old is happily juggling a schedule that includes everything from flag football and Cub Scouts to piano lessons and bike riding. He’s a world class charmer, too. Mothers of girls at school tell his mom that their daughters are always talking about him. So are his teachers, who praise Owen as an outstanding student.

The other unhappy side of this story is the indented vertical darkened line of skin extending from Owen’s forehead to the area between his eyebrows. This is the onset of PRS, which usually strikes between the ages of five and 15—cause, like a cure, unknown.

SADLY, SO MANY PROBLEMS

PRS brings on a litany of symptoms that include seizures and pain plus vision and dental problems.

The severity of these and other symptoms vary among patients. But one generally common characteristic is a slow-moving, progressive deterioration of the skin and soft tissues of the face. Since there is no cure for PRS, plastic surgery is the only alternative to resulting facial distortion. And there is a possibility that the procedure will not be successful.

Progression of the skin and tissue deterioration often lasts “from 2 to 10 years, and then the process seems to enter a stable phase,” according to an Internet report published by the National Institute of Neurological Disorders and Stroke.

RAYS OF HOPE

The best that can be said about PRS at this time is that in some cases, “the atrophy (deterioration) ends before the entire face is affected. In mild cases, the disorder usually causes no disability other than cosmetic effects,” according to NINDS.

Obviously, considerable research as well as increased public awareness is urgently needed to fight this insidious disease. If, for some reason, you’re not convinced of just how urgent the need is, think of Owen.

Then Google prsresource.com.

SHE KEEPS ART IN KIDS’ LIVES

An Internet report from UCLA Newsroom lists visual arts among the “essential programs” that “most (Southern California) schools have reduced or eliminated.”  Deep budget cuts have left these schools with no other choices.

Does this put an end to the earnest efforts of 8th grade Rodins, potential Picassos, and kids who simply have fun messing around with a paint brush, drawing pencil or clay?

Not on Karen Sochar’s watch.

The determined Ms. Sochar is Executive Director of LA Arts Academy in Santa Monica which, she noted proudly, “has been providing kids age five to 15 with a fine art experience for 12 years.” The curriculum includes classes in drawing, painting and sculpture. Ceramic sculpture and functional art are also taught.

In addition, LA Arts’ Winter Art Camp, which deserves a plug, runs December 20-31. Early and extended care is available. For details, visit LAarts@Gmail.com or call 310-829-ARTS.

And there’s more where this comes from.

For starters, students may qualify for an LA Arts Academy Financial Aid scholarship by maintaining a B minus average or better with timely and good attendance.  As might be expected, this program has been somewhat curtailed due to—what else but—limited funding. “Despite being handicapped financially we’re still awarding scholarships,” Sochar said.

She’s on the road, too, staging art parties at in-home birthday celebrations and other special events. Finally, we can’t figure out how Sochar finds the time, but she teaches fine art in area schools as an independent contractor. Local Booster Clubs and PTAs fund these solo performances.

Clearly, Sochar is doing her part locally to help bridge the educational gap created by art class closures. But think bigger. That gap extends to school districts throughout the country. Why can’t qualified people in these districts copy some, or all, of her activities? We would at least be on our way toward possibly solving the problem nationally.

Whatever the outcome elsewhere, Karen Sochar not only has the desire, but the credentials, to fight the good fight at home.

She earned a Bachelor of Arts, Cum Laude degree as a fine art major at the University of South Florida, and has more than 30 years of teaching experience.

Over those three plus decades, her students ran the age group gamut—from pre-kindergarten to senior citizen. She taught at Los Angeles’ prestigious Getty Center and the Montessori School in Santa Monica. Among other California career stops were John Thomas Dye School of Bel Air and the Culture & Language Academy of Success in Los Angeles.

In 1998 budget tightening was already beginning to take its toll of school-based art programs. Sochar, by then a widely known, well respected art teacher and educator, was asked to help revive art education in the west Los Angeles area communities she served so well. Her answer was the LA Arts Academy. It was the right answer then, as it is today.