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Table
of Contents
Development pace quickens for Silicon Valley Children’s
Hospital Foundation
Genetic Testing Can Save Lives
Valley Medical Center opens Pediatric Playground
BAWSI aims at improving girls’ health
News
Enhancing Creative and Athletic Performance: The
Psychology & Psychiatry of Sports & Performing Arts
Development
pace quickens for silicon Valley Children's Hospital Foundation
The Silicon Valley Children’s Hospital Foundation has named its
first executive director in one of a series of new steps boosting its
effort to build a hospital dedicated to providing for the healthcare and
support needs of children and their families in San José.
Marlene Bjornsrud, with more than 30 years’ experience
in management and non-profit work and previously general manager of the
San José CyberRays women’s professional soccer team, will
oversee the hospital foundation’s communications efforts with
the public and its various constituencies as well as managing its relationship
with its new charity partners.
 |
Marlene
Bjornsrud, newly appointed |
Further enhancing the foundation’s work is the
addition of two new members to its board of directors. Dan Doore, currently
CEO and president of the Bay Area Pain Center in Los Gatos, previously
served in those capacities at Good Samaritan Hospital and later at Community
Hospital of Los Gatos. Dr. Jeff Kanel, a pediatric orthopedic surgeon
practicing in the South Bay, moves to the board after serving on the Foundation’s
Medical Advisory Council.
“These appointments will accelerate our work in establishing a children’s
hospital in the largest U.S. city without such inpatient care, and they
reflect our foundation’s increased activity level as our efforts
near their goal,’’ said Kathleen King, chair of the Foundation’s
board of directors.
“We have enormous respect for the commitment and dedication of the
Silicon Valley Children’s Hospital Foundation to expanding the health
care resources available to the children of San Jose, and look forward
to ultimately achieving our joint goal of a dedicated children’s
hospital service in San Jose”, said Christopher Dawes, CEO of Lucile
Packard Children’s Hospital at Stanford.
Four new charity partnerships are also being announced in which the Silicon
Valley Children’s Hospital Foundation will be the exclusive beneficiary:
- The Silicon Valley Children’s Hospital Foundation Benefit Golf Tournament, sponsored by the Kiwanis Club of Cambrian Park. The tournament will be held Friday, June 10 at Coyote Creek Golf Club in Morgan Hill.
- A benefit reception at the grand opening of the babystyle® retail store in Valley Fair Mall. At the June 8th event, a percentage of the proceeds of the evening’s sales will be donated to the Foundation.
- The Silicon Valley Marathon on Sunday, Oct. 30. A portion of the entry fees from the 5K will benefit the foundation.
- The Los Gatos Chamber of Commerce’s Big Deal, an evening of food tasting from local restaurants, gambling and auction, will benefit the foundation. The event is Friday, Oct. 7 at the Los Gatos Opera House.
“Working with the Silicon Valley Children’s Hospital Foundation
will be an exciting undertaking, especially with the momentum of our current
progress,’’ Bjornsrud said.
Bjornsrud’s career includes leadership roles in non-profit organizations
working with youth and the homeless as well as extensive experience in
sports administration, including posts as assistant athletic director
at two universities before moving to the CyberRays.
Back to the Genetic Testing Can Save Lives
The youngest of our twins, Robert was born June 20, 1996 with what we thought were many birth defects, hearing loss, reflux, skull fusing too early, a herniated belly button, cataracts in his eyes, scoliosis in his lower back, delayed mental development and trigger fingers.
 |
This photo was taken during Robert’s first bone marrow transplant, before all his thick white blond hair fell out and before he became too sick to smile. |
After 20 surgeries in the first four years of his life, he was finally
diagnosed with a rare lissome storage disease, a syndrome so rare that
only 220 people in the world have been diagnosed. Robert went through
two bone marrow transplants at UCSF with the same unrelated donor’s
marrow.
Could he have been diagnosed at birth with genetic screening? Robert’s
syndrome is so rare that it is not likely our state or any state would
test for it. Australia is the only country testing currently for this
type syndrome, but there are many more common syndromes that can be picked
up with a simple blood test at birth. Galactosemia, a syndrome that most
states test for currently, is intolerance to milk products, enough to
kill a newborn on dairy products.
The most expensive genetic testing after birth can be as much as $90 and
may not be paid for by your insurance plan, but a late diagnosis can affect
your child’s quality of life or lead to premature death. Testing
is an inexpensive assurance as to the overall health of your newborn.
Please be proactive. Kathleen King, kk2king@comcast.net
Will My Baby Get The Same Test No Matter Where I Live?
No. Although all states require a newborn screening test be performed
on babies born in their state, each state screens for different disorders.
The newborn screening test is capable of screening for more than 50 disorders,
yet most states screen for less than 8. For example, if your child was
born in the state of California in 2004, your baby was screened for 4
disorders. Yet, if your baby had been born in Mississippi, he or she would
have been screened for 39 disorders.
California enacted legislation that will add more than 30 disorders and
their various forms to the state's newborn screening panel and the screening
is planned to start by August, 2005. California is informing parents about
supplemental newborn screening and how to obtain it for their babies.
All parents should check to find out what screen will be done in their
hospital. Testing beyond what is standard at your hospital can be obtained
commercially. The additional tests can be added to the original heel prick
test but may not be covered by your insurance.
Websites:
www.savebabies.org
http://www.dhs.ca.gov/pcfh/GDB/html/NBS/Mainmenu.htmLab
information is subject to change
These facilities offer complete screening:
Pediatrix Screening
1.866.993.2300
45+ disorders
$89.00 + S&H
These facilities offer partial screening only:
Mayo Medical Laboratories
1.800.533.1710
35 disorders for $57.30
Ask for Supplemental Newborn Screen, MML Test #82594
By physician order only
Baylor Medical Center
1.800.422.9567
30+ disorders for $25
Not Available in New York
University of Colorado Health Sciences Center Biochemical Genetics Laboratory
1.303.724.3826
20+ disorders for $25
For genetic concerns after birth, meet with your local neurologist
Dr. Ted Guarino or
Dr. Mark Koukkari 408.271.5271
or genetic specialists at Lucile Packard.
The Director of Biochemical Genetics at LPCH is:
Dr. Greg Enns
650-723-6858
greg.enns@stanford.edu
Back
to the Valley Medical
Center opens Pediatric Playground.
 |
Sharon
Kelleher, the USA’s #1-ranked |
At an event to preview the latest addition in its services
to children, Santa Clara Valley Medical Center (SCVMC) was recognized
as the first public hospital in the Bay Area with a child-friendly outdoor
playground. Located on the 5th floor of the hospital housing the pediatrics
services, the new playground will provide children recovering from illness
and injury the freedom to play outdoors in fresh air and sunlight. Along
with a basketball hoop and backboard, the playground will include a jungle-gym,
a kiddy-cycle “race way” and a railed exercise ramp. Kathleen
King, chair of Silicon Valley Children’s Hospital Foundation, and
members of the Bay Area Women’s Sports Initiative were in attendance
at the grand opening.
Donors included Executive Council member, Elaine Elkin, Lucile Packard
Children’s Hospital, and our own foundation.
 |
Members
of San Jose Staté University women’s basketball team
who offered some local children guidance on the finer points of
shooting hoops. |
Back to the Top BAWSI aims at improving girls’ health
BAWSI might sound, well, “bossy,” but it’s
really the Bay Area Women’s Sports Initiative, a new nonprofit organization
that has begun developing programs to improve the health of girls and
women through sports.
Founded by Marlene Bjornsrud, new executive director of the Silicon Valley
Children’s Hospital Foundation, along with SVCHF board member and
women’s soccer star Brandi Chastain, BAWSI has already begun work
at San José’s Overfelt High School in a pilot program designed
to fight obesity and build self-esteem among teen-age girls.
 |
BAWSI
founders Marlene Bjornsrud and |
Across the nation, obesity is one of the most serious health concerns
facing our population. An alarming 15% of adolescents 12-17 years old
are overweight, and of that number 80% have the potential to become obese
adults. According to the Surgeon General, approximately 300,000 U.S. residents
die every year because of preventable weight-related problems. Left alone,
obesity may soon cause more death and disease than cigarette smoking.
“Too many girls lack the confidence to try a team sport or aren’t
encouraged to participate,” says Bjornsrud. Our approach to teaching
healthy lifestyles removes those obstacles by teaming girls with accomplished
female athletes who’ve had real-world experience and success in
conquering those problems.”
BAWSI plans to expand the GoGirlGo! program to several other schools in
the fall, utilizing the talents of intercollegiate women athletes throughout
the South Bay.
Look for these websites for more information:
BAWSI www.bawsi.org
GoGirlGo! program www.GoGirlGo.com
Back to the TopNews
Congratulations to Mike Fox Sr. who has had successful
eye surgery and is looking forward to see all of us more clearly.
Congratulations to Linda Durnell. May the Linda Durnell Gallery bring
Linda much fame, fortune, and good friends to visit her in Los Gatos.
Thank you to the Kiwanis Club of Cambrian Park for hosting the first ever
golf turnament on June 10th in support of the children’s hospital.
Thank you to babystyle Valley Fair Mall for making us their charitable
partner. Please visit their store after June 8th and thank them for
supporting us.
And last, but not least, thank you Applied Materials, Inc. for your continuous
financial support. We all appreciate your help.
Back to the TopEnhancing Creative and Athletic Performance: The Psychology & Psychiatry of Sports & Performing Arts
- When: New Date: Tuesday, August 23, 7:00 pm
- Where: Freidenrich Auditorium
Lucile Packard Children’s Hospital
Palo Alto - To Register Call: 650.723.1022
- Contact Email: referral@stanfordmed.org
- Fee: None
Presented By Community Relations
Dr. Hans Steiner, Professor of Psychiatry and Behavioral Sciences, Child
Psychiatry and Child Development at the Stanford University School of
Medicine and Glenn Brassington, PhD, Clinical Instructor have developed
a fascinating program for parents, coaches and teachers in the community.
Learn the do’s and do nots of how to support a child’s athletic
and creative performance goals.
This program is free of charge, however, LPCH asks that you call to RSVP
as seating space is limited.