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NephCure
Initiatives Spring to Life in Seattle
It's
been a busy spring in Seattle for the NephCure
Foundation as our members and physicians work
to implement NephCure's national research,
patient education and fund-raising initiatives.
Some highlights:
• About 40
patients and families attended a four-hour
seminar on May 4 at Seattle's Washington
Athletic Club to hear detailed presentations
from expert physicians/scientists about various
aspects of Nephrotic Syndrome and FSGS.
•
NephCure sponsored a May 4 "Hot Topics
in Renal Genetics Diseases" symposium
for some 250 physicians as part of the annual
meeting
of the American Society of Pediatric Nephrology.
•
NephCure Vice President Brian Orton detailed
plans
for the NephCure Seattle Chapter's June 20
motorcycle marathon (230 miles) at the Pacific
Raceways course to raise funds for research
into NS and FSGS.
•
NephCure officers had discussions with
numerous federal officials responsible
for the upcoming FSGS clinical trials
and the ancillary studies to be sponsored
jointly by NephCure and the National Institute
of Diabetes and Digestive and Kidney Diseases
(NIDDK).
The
free Patient Education Seminar was deemed
very helpful by the patients and families
who asked questions during the physician
presentations and the lunch that followed.
Said Jennifer Fisher, of Bellevue Wash.:
"We walked away learning new things
that we hadn't known in dealing with minimal
change NS over the last two years, since
our son Sam, 6, was diagnosed."
Jennifer,
who attended with husband Mark, reported
that other parents at the session seemed
eager to have a new support network. "It
was really beneficial to be able to ask
the physicians questions," she said.
During the luncheon, some of the teenaged
patients eagerly exchanged e-mail addresses
so they could share ideas and tips about
coping with their conditions. Parents talked
with each other and the physicians, who
stayed on for the lunch session.
Speakers
at the seminar included two members of the
NephCure Scientific Advisory Board (SAB)
- Frederick Kaskel, M.D., Professor and
Chief, Division of Pediatric Nephrology,
Albert Einstein School of Medicine; and
Friedhelm Hildebrandt, M.D., Professor of
Pediatrics and Human Genetics, University
of Michigan Medical School. The other speakers
were Allison Eddy, M.D., Professor and Chief,
Division of Pediatric Nephrology, University
of Washington; and Sangeeta Hingorani, M.D.,
MPH, Assistant Professor of Pediatric Nephrology,
University of Washington.
Stay
tuned to www.nephcure.org
to learn about upcoming seminars in other
regions of the nation. If you would like
a copy of the two-hour videotape of the
seminar conducted in Philadelphia last November,
please email info@nephcure.org.
Among
the well-known researchers who spoke at
the NephCure-sponsored symposium during
the national meeting of pediatric nephrologists
was William E. Smoyer, MD, director of the
pediatric nephrology division at University
of Michigan Medical Center. A member of
the NephCure Foundation Board of Directors,
Dr. Smoyer, spoke about two recently-discovered
genes - podicin and nephrin - known to cause
injury in the kidney's filters. NephCure's
Dr. Hildebrandt also spoke at the two-hour
symposium.
NephCure
Co-founder Brian Orton disclosed plans this
spring for the new Seattle Chapter's first
fund-raiser, "The Seattle 100: Racing
Towards a Cure for Kidney Disease." Motorcycle
racers such as Brian will run the 100 lap event
from 9 a.m. to 4 p.m. on June 20. Each rider
will be sponsored through per-lap pledges from
families, friends and co-workers. Brian and
wife Tina have a four-year old son, Christian,
who is in remission from minimal change Nephrotic
Syndrome. Brian organized the event with Adrenalin
Freaks Trackday Excursions, Ricci Motorsports,
the Washington Motorcycle Road Racing Association
(WMRRA), Eastside Motorsports and Kneedraggers.com.
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