Carter was diagnosed with a rare form of liver cancer but is now cancer free thanks to CHOC.

carterKara Kipp has been a member of the Glass Slipper Guild for the past nine years. She and her husband Matt are the proud parents of three amazing boys, Bennett, Carter and Davis.

On April 17, 2009 their son Carter, seemingly healthy 22-month old was diagnosed with a rare form of liver cancer called hepatoblastoma. Less than 48 hours after being diagnosed, Carter was checked into CHOC Children’s and the oncology floor became their reality. Carter’s road map of action entailed four rounds of chemotherapy, then resection surgery and liver transplant, followed by two more rounds of chemotherapy. Carter did remarkably well from his transplant and after four weeks of recovery, went into CHOC for his final two rounds of chemo. Carter is now having follow-up scans and blood work done, and everything looks great for Carter. Carter has been cancer-free for four years.

The nurses and doctors at CHOC became the Kipps extended family, and Carter still considers them his closest friends. Not having an opportunity to interact with other kids his age, he thinks it’s perfectly normal to have so many doctors and nurses as his buddies.

The Kipp Family is forever grateful for CHOC and their leadership in making their son cancer-free.

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Investing in Care

Stephen and Cynthia Fry of Newport Coast are longtime philanthropists in Orange County who were introduced to CHOC Children’s three years ago when their young granddaughter was diagnosed with a rare and deadly genetic disease.

annual-report-2013-investing-in-care-2Charlotte Jordan went undiagnosed by several physicians until age 3½, when CHOC specialists in the division of metabolic disorders diagnosed her with glycogen storage disease 1a (GSD). This disease results in Charlotte’s liver being able to soak up and store glucose, but not release it effectively. Without treatment, the abnormally low content of glucose in her blood (hypoglycemia, commonly referred to as low blood sugar ) can lead to life-threatening complications.  Her very rare disorder requires around-the-clock maintenance, including regular visits with Charlotte’s doctor, Richard Chang, M.D., and his team.

Through this experience, Charlotte’s family was inspired to give back to Dr. Chang and the division of metabolic disorders as a special way of saying “thank you,” making CHOC one of the family’s annual philanthropic priorities.  “The entire team does their job with such grace and care that it’s almost overwhelming,” says Lindsay Jordan, Charlotte’s mother. “It’s a difficult disease. I don’t know how any parent who has a child with a serious illness can get through it without having someone like Dr. Chang in their corner.”

Metabolic disorders are an area of medicine that receive relatively little funding because the disorders are so rare. “The Fry family’s generous giving helps pay for a full-time nurse practitioner to educate CHOC staff members about metabolic disorders,” says Dr. Chang.  “A gift like this allows CHOC to truly care for kids in ways that otherwise wouldn’t be possible.”

No case too rare

Doctors on CHOC’s metabolic disorders team spend hours steeped in research and commonly see patients for whom there is no immediate diagnosis.

“It takes a lot of training to be a specialist in this area,” Dr. Chang says. “Many of the patients we treat have conditions so rare that they are among only a handful of patients worldwide to have that specific disorder.”  Dr. Chang and the metabolic team see about 45 children a week on an outpatient basis. At the same time, they care for five to 10 patients admitted to CHOC who are being assessed or treated for rare metabolic disorders. Such patients, he says, typically require care their entire lives.  Charlotte, now 6 ½, has to be extremely careful about what she eats and because of her enlarged liver can’t participate in contact sports. Every three to four hours, she receives three to four tablespoons of raw corn starch which slowly releases the glucose her body needs without overtaxing her liver.

“Charlotte is thriving, happy and healthy as we can hope for, and that makes my husband and me, as well as my parents, very grateful,” Jordan says. “We’re lucky to have Dr. Chang and the entire metabolic team in our lives.”  This past year, in addition to making their annual donation supporting the division of metabolic disorders, the Fry family gave an additional, and unexpected, $1 million to help build the Bill Holmes Tower and name the admitting reception space that is located on the first floor of the new building. The family wanted the leadership donation to make a significant impact at CHOC and help expand the hospital—a place filled with very special people who have become like family to Charlotte.

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The Gift that Keeps on Giving

Varla and Curtis Knauss have spent their entire careers helping people get the most out of their hard-earned money—he as a financial planner, she as a CPA.

Now, the Orange County couple is making sure that some of their money will yield ongoing and lasting benefits to CHOC Children’s.

The Knausses recently left a generous gift in their living trust to CHOC.  They say they decided to support the hospital through this avenue because they understood that estate and planned giving was one of the easiest and most impactful ways to support the hospital’s goal to become the nation’s finest provider of pediatric care.  Every gift, no matter the size or the area that it supports, can make a significant impact on the lives of our children.

As a registered representative of Transamerica Financial Advisors, Inc., Knauss has spent his adult life helping local professionals.  Knauss learned the value of a hard-earned dollar at an early age. Growing up in Long Beach, he worked his way through school as a tradesman.

In 1965, Knauss decided he would go into business for himself and became a financial adviser, planning futures for prominent business owners and independent professionals.

With his extensive financial background and expertise, it came as no surprise that a planned gift was the Knausses’ preferred form of philanthropy.  They understood that this type of gift would allow them to support the hospital’s mission and fulfill their philanthropic vision, all while meeting their family’s financial objectives.

Varla and Curtis Knauss are now members of the Circle of Life Society, forging a relationship with CHOC that will last a lifetime.  As members, they receive a gift of appreciation, an invitation to CHOC’s annual Circle of Friends event and recognition in several of CHOC’s publications.

To learn more about how you can make an estate or planned gift to CHOC and become a Circle of Life member, contact Doug Corbin, senior planned giving counsel, CHOC Children’s Foundation, at 714-509-3007.

CHOC Children’s Foundation
1201 West La Veta Ave., Orange, CA 92868

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The First to Answer a Call

argyros family
The Argyros family also has generously sponsored two signature hospital fundraising events, the CHOC Cherishes Children Gala and the CHOC Follies, for which Julia has also donated her time and talent as a cast member. Stephanie Argyros also is on the CHOC Children’s Foundation Board of Directors.

Designed to meet the unique needs of children in a safe and serene environment, the Julia and George Argyros Emergency Department at CHOC Children’s is the first in Orange County exclusively dedicated to the treatment and healing of children of all ages—from the tiniest newborns to adolescents.

The new emergency department, located on the ground floor of the Bill Holmes Tower, is named in honor of CHOC Children’s supporters Julia and George Argyros for their generous gift of $5 million. The 22,000-square-foot emergency department features 31 exam rooms, including 14 rapid evaluation and treatment rooms, and three triage suites.

In addition to their gift for the new emergency department, the Argyros family helped launch CHOC’s comprehensive fundraising campaign, “Change CHOC, Change the World,” with a leadership gift of $1 million in 2009. In recognition of that gift and in honor of Julia and George’s daughter, the surgery center reception area in CHOC’s new tower is named “The Stephanie A. Argyros Reception.”

The emergency department at CHOC Children’s is staffed with doctors who are board-certified in emergency medicine and specially trained nurses who provide the very best patient and family-centered care 24 hours a day, seven days a week.

The emergency department is close to advanced operating rooms, laboratory, pathology and imaging services—each with a dedicated pediatric environment and staff. From the equipment to the facilities to the décor, the emergency department is designed to meet the needs of children.

Each exam room is spacious enough to accommodate strollers and other children who often accompany their siblings on emergency visits to the hospital.

Child life specialists work with patients to help them feel safe and secure and make the process a lot less stressful for the entire family.

In addition to providing families the room and service they need, the emergency department provides many of the services patients may need without having to leave the unit. Most blood draws and tests can be done at the patient’s bedside, and X-ray equipment also is available in the unit.

In all respects, the Julia and George Argyros Emergency Department represents the future of medicine today— a world-class pediatric emergency department that will benefit the children of Orange County and their families for years to come.

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Gift Puts Genomic Research into High Gear

annual-report-2013-genomic-researchFor more than a decade, the cure rate for pediatric cancer has been stalled at about 80 percent. A multidisciplinary team of specialists at the Hyundai Cancer Institute at CHOC Children’s is working to find cures for the other 20 percent—and won’t stop until they do.

Thanks to a gift in 2011 of $10 million from Hyundai Motor America, the largest corporate gift in CHOC’s history, Leonard Sender, M.D., medical director of the Cancer Institute, and his team are conducting cutting-edge genomic research to better understand cancers that occur in children and teenagers.

Whole genome (DNA) sequencing of both tumors and healthy tissue and transcriptome (RNA) sequencing of tumors is being conducted to identify the molecular profile of cancers occurring in patients, according to Dr. Sender. The goal is to identify genetic mutations that may be responsible for a child’s cancer, and to determine how cancer cells differ from cells that have mutated but are noncancerous.

Once whole genome and transcriptome sequencing procedures are performed, the data is analyzed by oncologists, cancer epidemiologists, cancer biologists and bioinformaticists. Their aim is to identify treatments and available medications that may be beneficial for the patient based on the molecular profile of the cancer.

“Even if we are unable to identify a treatment that is available now, the information learned may be used to help us better understand what causes cancer and how it may be treated or prevented in the future,” Dr. Sender said.

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One in 10 Million

Two months after their son Ricky was born on Dec. 6, 2012, Richard Alcedo and his wife, Wendy, noticed he was getting small bumps on his face.

They took him to several doctors until a dermatologist did a skin test, diagnosing him with JXG (juvenile xanthogranuloma), an extremely rare disease that even in its common form affects only one in 1 million children, typically those 10 or younger.

One physician they consulted gave Alcedo a puzzled look after examining Ricky.

“This is new,” she said, reaching for her iPhone to look up information on the illness afflicting Ricky.

Alcedo knew that moment that he needed to take Ricky to another hospital—one with specialists highly trained in diagnosing and treating rare diseases like JXG, which acts like a cancer and responds to chemotherapy but technically is not a cancer.

“We ended up at CHOC where they had specialists who understood Ricky’s diagnosis,“ said Alcedo,“ and we knew immediately Ricky was in the right hands.”annual-report-2013-one-in-ten-million

Recognizing the rarest cases

Lilibeth Torno, M.D., clinical director of outpatient services and head of ambulatory care services at The Hyundai Cancer Institute at CHOC Children’s, examined Ricky.

She observed the brownish rash on his face and his distended stomach, confirmed that his liver and spleen were enlarged, and ordered MRI and ultrasound tests— something no other physician had done before.

The tests confirmed that Ricky not only had JXG, but systemic JXG—a rare form of the disease that afflicts only one in 10 million children. Dr. Torno started Ricky on mild chemotherapy.

JXG belongs to a group of illnesses called histiocytoses, which are associated with an excess of white blood cells that are supposed to fight infections, but for unknown reasons cluster together, forming bumps or lesions that attack different organs.

In systemic JXG, lesions are present in multiple organs.  Without proper treatment, the disease is fatal.

A team in search of a cure

Dr. Torno is one of 10 physicians at the Cancer Institute who are immersed in such cutting-edge research as molecular and genetic profiling to find out what triggers such diseases as JXG—and what can be done to cure them.

“CHOC Children’s is best equipped to treat such a disease,” Dr. Torno said. “Our goal is to be able to do genetic and molecular profiling of patients to help us understand eventually how these things happen.”

The institute sees close to 200 new patients a year, and many of its specialists are disease specific—for example, doctors assigned to a team for leukemia, and a team for brain tumors. The outpatient clinic provides comprehensive care for children undergoing chemotherapy, as well as those who have completed therapy.

Spreading the word

Dr. Torno says that Ricky is responding well to chemotherapy, which will continue through May 2014.  Then he will be reassessed.  JXG lesions sometimes can turn into tumors.

Although he and his family live just beyond the Orange County border, Alcedo had never heard of CHOC Children’s until Ricky’s godmother suggested he be treated there. Now Alcedo is determined to spread the word about the great care Ricky continues to receive.

To that end, the Alcedo family and Ricky participated in CHOC’s annual Walk in the Park at the Disneyland Resort.   Their goal was to raise $10,000.

The Alcedo family is enjoying Ricky—and resting a little easier knowing he’s in the expert hands of top specialists at CHOC Children’s.

“He’s a happy baby,” Alcedo says.  “He’s always smiling. The nurses have commented that they can’t believe he’s sick because he’s always smiling and happy.

“We are truly grateful for CHOC and everything they have done for us. Not only are they treating our son, but they are giving us peace of mind knowing that Ricky is in capable hands.”

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Tower Gift is a Testament To Long-Term Investment in CHOC

annual-report-2013-bill-holmes-giftBill Holmes’ history-making $27 million gift to CHOC Children’s represents his commitment to ensuring the health and well-being of children in Orange County and beyond.  This extraordinary gift allows CHOC to progress on its journey to becoming the leading destination for children’s health by providing exceptional and innovative care.

The opening of the new seven-story Bill Holmes Tower—colorful and dramatic, a beacon of hope in the heart of Orange County—marks a pivotal moment in CHOC’s proud and eventful history.

Highlights of the new Bill Holmes Tower:

  • The tower has tripled the size of our inpatient care facility in Orange.
  • It contains the region’s only dedicated pediatric emergency department, operating rooms, imaging department and laboratory.
  • New technology and additional resources, as well as world-class talent and research capabilities, combine to make for the best in clinical care, research and education.
  • Safety is built into the tower. Every patient room and operating room is designed as “same handed” with supplies and equipment located in exactly the same places to minimize the potential for human error.
  • An array of interior spaces utilizes light, color and spacious design to help lift spirits and and contribute to a soothing atmosphere that is conducive to healing.
  • Our doctors, nurses and staff employ the latest technology, along with standardized, integrated processes, to deliver the best in pediatric care.

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Video: Thank You for all the Ways You Give

I sure am grateful for all the ways that CHOC has helped me in the last 50 years. But for this week’s stop on my gratitude tour, I want to thank you!

Not a day goes by that I am not surprised and touched by the generosity that you and the community show CHOC.

Whether it’s your money, time, toys and books, or blood, you steadfastly give, and CHOC is so very grateful.

CHOC Blood Donors: Like Father, Like Son

Since 2006, father and son Jerry and Jeremy Wilcox have had a standing date every eight weeks at CHOC Children’s:  Together, they roll up their sleeves and donate blood.

“We both have the mindset that if we can help people, then we help people,” Jeremy says.  “We may not always have the money to donate to organizations, but we do have time and we do have the ‘good veins.’ Because of that, we are just doing what we can to help those in need.”

The father-son tradition of giving life together is particularly significant with Father’s Day this weekend – as well as the nearing of summertime, which is traditionally a season of low blood donations at CHOC Children’s and blood centers nationwide. At CHOC Children’s, donation rates are typically 20 percent lower during this time.

The Wilcox men’s multi-generational tradition of donating blood extends well past 2006: Jerry’s own father was a frequent donor, which inspired Jerry to begin donating in college. Jerry had a similar influence on Jeremy.

In addition to providing a way to help others, the Wilcox men’s regular donations allow the duo an opportunity to take a break from their busy lives and catch up.

“I enjoy it,” Jerry says. “It’s a chance for us to see each other at least every eight weeks. We walk in, there’s no wait. We get to talk for an hour, and we get great cookies.”

Jerry began donating at CHOC Children’s in 2005 as a participant in the hospital’s Designated Donor Program, which allows blood donations to be directed to a specific patient.

Jeremy’s long tradition of blood donation began in high school. Now the father of two small children, he has a finer understanding of the significance of blood donations in a pediatric setting.

“If my kids got sick, they’d come to CHOC,” he says. “CHOC takes care of me, and I have all the confidence that they would take great care of my children.”

Despite the steadfast commitment from the Wilcox men and other blood donors, CHOC Children’s is in desperate need of blood donations of all types year round. Donations meet just 65 percent of the hospital’s annual need, and blood platelet donations meet just 35 percent of CHOC’s need. To supplement donations, CHOC spends more than $1 million annually to purchase necessary blood.

“Just try donating once,” Jeremy says. “It doesn’t hurt, and it gives you a warm fuzzy feeling that you could really help someone.”

Learn more about blood donation.

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Events To Benefit Kids

ar-2012-choc-walk-in-the-parkCHOC Walk In The Park

The happiest place on earth always seems a little more magical in October. The annual CHOC Walk in The Park at the Disneyland Resort® reunites CHOC Children’s physicians, nurses, Associates, Disney Cast Members and volunteers with patients, former patients and families to support our hospital. This past year, their efforts raised $1.7 million. Since its inception, the CHOC Walk has cumulatively raised more than $20 million to benefit CHOC Children’s programs and services.


CHOC Follies XV

ar-2012-choc-walk-in-the-park2After the first musical production premiered 15 years ago, the CHOC Follies quickly became one of the most anticipated social events of the year. “Christina and the Crystal Ball, a Cinderella Story for the Social Net Set,” this past March, was no exception. More than 90 of Orange County’s business and community leaders performed a hilarious spoof on the classic fairy tale with a modern, online twist. To date, the CHOC Follies has raised close to $6 million to benefit CHOC Children’s programs. This year’s proceeds will support the construction of Seacrest Studios, an interactive broadcast multimedia center that provides patients with an outlet to engage in creative activities related to broadcast media. It’s another step forward in providing avenues of healing for patients at CHOC Children’s. A project of the Ryan Seacrest Foundation, the studio is scheduled to open next year in the hospital’s new seven-story patient care tower.


CHOC Cherishes Children Gala

ar-2012-choc-cherishes-children-logo“Building Bigger Dreams” was the theme of this year’s CHOC Cherishes Children Gala held at the Island Hotel in Newport Beach, in January. More than 300 guests raised $600,000 for the new patient care tower that opens next year.

At the gala, Hyundai Motor America received the “Children’s Champion Award” for making a significant impact on the fight against pediatric cancer. Hyundai, and its nonprofit organization Hope on Wheels®, donated $10 million to CHOC—the largest corporate gift in our hospital’s history.

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