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
714-509-8690
www.choc.org/giving

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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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