Insider January-February 2007

by Quest Staff on January 1, 2007 - 4:24pm

QUEST Vol. 14, No. 1

Inventor makes fun accessible

Shahrad Selahvarzi
Shahrad Selahvarzi with his adaptive remote

When 36-year-old Shahrad Selahvarzi was growing up, he always wanted to play with remote-controlled cars. Because of his spinal muscular atrophy, he was only able to grip one control at a time, and most remote-controlled cars come with two controls — one for forward/backward and one for right/left.

Selahvarzi came up with an idea for an adaptive remote that combines the two toggles into one easy-to-push switch that can be controlled with an arm, finger or chin.

“You see a lot of things for wheelchairs, but you don’t see anything to help with entertainment,” Selahvarzi said.

The Pleasanton, Calif., resident also designed a low-maintenance fish tank that’s perfect for people who have trouble taking big tanks to the sink and cleaning them. The 25-gallon American Aquatic Diamond tank has a filter at the bottom that continuously cycles clean water through the tank.

“This is a more efficient way and is less frustrating,” Selahvarzi said.

Next, Selahvarzi hopes to put together devices to help people with disabilities go to arcades and enjoy air hockey, foosball and video games.

For anyone interested in the adaptive remote control, Selahvarzi can be reached at (510) 315-6876.

Design firm exec does it his way

Jim Panebianco
Jim Panebianco takes this bridge in downtown Chicago to get from his home to his design firm. Photo by Bobbie Burgess / 2007

Waking up every morning in his historic Chicago high-rise apartment, Jim Panebianco prepares to go across the street to the graphic design company he started nearly 30 years ago.

The 61-year-old, who was found to have spinal muscular atrophy at age 8, lives his life according to the adage that nothing is impossible.

Graduating from the University of Illinois with a degree in graphic design, Panebianco spent six years working as an art director for an ad agency before he was laid off. After running into some discrimination while looking for a new job, Panebianco decided to take matters into his own hands and start a graphic design firm.

Today, Panebianco Design has several employees and such high profile clients as McDonald’s, Sears and United Airlines. He also does some pro bono work for MDA.

Panebianco doesn’t recommend his entrepreneurial career path for everyone.

“Don’t do it,” Panebianco joked about starting a business. “Have exposure to various aspects of your industry, get out and work. Gain some self-confidence and interaction with people first.”

Starting out, Panebianco missed the steady paycheck, but now he enjoys the freedom to set his own hours and take complete responsibility for his work.

Although not involved in the hands-on part of the business anymore, Panebianco is still creative director on all projects. Those include everything from kiosks to menus, including logos, brochures, packaging, convention materials and Web sites.

As Panebianco Design prepares to move to a larger office, its optimistic owner says life is business as usual.

“If I didn’t work, I wouldn’t be able to afford wine,” he said.

Power soccer’s Team USA selects nine

Nine athletes with neuromuscular diseases have been selected for this season’s United States Power Soccer Association’s 12-member Team USA.

The athletes are: MDA National Task Force on Public Awareness member Elio Navarro, Tampa, Fla.; Jerry Book, San Jose, Calif.; Danny Gorman, Safety Harbor, Fla.; Jessica Lehman, Sacramento, Calif.; Natalie Russo and JC Russo, Carmel, Ind.; Dakotah Smith, Kennesaw, Ga.; Jairo Solorio and Omar Solorio, Hollister, Calif.

Selected from teams across the country, the members will arrive in Las Vegas Jan. 3 to train for the inaugural Power Soccer World Cup in Japan. The 12 athletes, who use power wheelchairs, are participating in five training camps leading up to the World Cup in October. Training camps are planned for Las Vegas; Newark, Calif.; Indianapolis; and Atlanta. All training camps are open to the public, and updates are available at

Prior to the World Cup, the coaches will select eight team members and four alternates. For more about power soccer, see “Get in the Game.”

Former chief all fired up

William Oehlke has been fascinated by fire fighters since childhood. So it’s no wonder that he spent nearly 30 years of his life as the fire chief in Devils Lake, N.D.

A diagnosis of Lambert-Eaton myasthenic syndrome in 1993 didn’t slow him down much. He adapted his job to his abilities and worked for another 10 years, then retired and wrote a book about his experiences.

Fire Hall Revisited, published last year, is a collection of the memorable moments in Oehlke’s fire-fighting career, written in a conversational style with vivid details. Copies can be ordered at, (866) 308-6235, $18.99.

As members of international Association of Fire Fighters, Oehlke and his colleagues helped to raise funds for MDA over many years, long before he was found to have a neuromuscular disease. He was a member of the International Association of Fire Chiefs.

Oehlke, 68, stays active in the community by serving on several city committees, visiting the fire hall for coffee twice a week and working ona second book, to report on humorous fire situations he’s dealt with and his LEMS diagnosis.

“Life has had its trials and tribulations, but with the help of my wife, MDA and my firemen, I continue to have a wonderful life,” Oehlke said.

Matt Johnson diving
Matt Johnston takes the plunge.

Diving dream comes true

It took three years, but Matt Johnston has made his dive. On Nov. 14, he spent 25 minutes under water in the Florida Keys, in two scuba dives.

Johnston, 30, of Woodbury, Minn., has Duchenne muscular dystrophy and requires a ventilator.

Johnston recruited engineering professors, corporate sponsors, physicians, scuba organizations, researchers, diving experts  and the Navy SEALS to help him realize his dream. After his team had created a diving suit that would accommodate a ventilator, he practiced some pool dives, then went to the ocean.

Johnston is believed to be the first ventilator-dependent quadriplegic in the world to go scuba diving in open water. Click on the link to read an earlier report on Johnston.


Paintball anyone?

Andy Pope of Latrobe, Pa., is looking for people with disabilities to join a paintball league forming across the country. If you’re interested, e-mail

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