Inventor Makes Fun Accessible
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 (www.
americanaquaticdesign.com) 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
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. See http://www.panebianco.com.
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 www.powersoccerUSA.net.
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,” May-June
2005.
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 www.booksurge.com,
(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 on
a 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.
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. See Quest’s earlier reports on
Johnston in March-April 2005 and
in Quest Extra, www.mdausa.org/publications/Quest/extra/qe13-2_scuba_diving.html.
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 andydpope@verizon.net.
For more see, http://mountnshoot.com/index.html.
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