The Friends of Cathryn Foundation is celebrating exciting news both locally and globally. They have reached a milestone – their tenth year – and have partnered with the Canadian Company Khure Health to focus on the diagnosis of rare cancers that pediatricians often miss and go undetected until children are very sick.
Susan Giusto founded The Friends of Cathryn or “FRoC” Foundation in 2010. The name was chosen to honor the friends who helped the Giusto family while her daughter Cathryn was in treatment at Children’s Hospital of Orange County (CHOC) for 13 months – from late 2008-2009.
Susan says, “The meals, prayers, playdates, hospital visits, moral, and emotional support were lifesaving during a very difficult time.”
“We are named after our now 17-year-old daughter who was diagnosed and won a battle against neuroblastoma when she was five years old and a student at Laguna Presbyterian Preschool and El Morro.”
The primary mission of the FRoC Foundation is to raise funds to develop less toxic and more targeted treatments for neuroblastoma, an aggressive solid tumor pediatric cancer.
Secondarily, but no less important, is their mission to support the families and caregivers of those children diagnosed with neuroblastoma.
Susan says, “We have raised over $1M for cancer research and supported families and children fighting cancer at local So Cal Children’s Hospitals.”
“We love the ‘Friends’ who inspired us at the start of this adventure and those who donate their time and resources to improve the outcome and lives of those families affected by this form of pediatric/children’s cancer,” says Susan.
“In 2009, Cathryn went through a stem cell transplant at CHOC, and I sat with other mothers whose children were there on Mother’s Day. One of my friends started a drive to put together baskets with items like magazines and candy and brought them up to the critical care unit for the mothers.”
FRoC carried on this idea and raised money to put together 150 Mother’s Day baskets to take to mothers whose children were being treated at hospitals like City of Hope and others in the area.
One of the things they’re currently doing during COVID-19 is to rally their supporters to create “craft bags” for kids at CHOC. COVID-19 has eliminated their bedside and playroom volunteers (which Susan has been for a couple years) so there is very little for kids to do besides TV and computer games. And, due to COVID and restrictions on donations, CHOC is very low on supplies for arts and crafts.
With a longtime relationship supporting CHOC, the foundation reached out to the community to get assistance in making Friends of Cathryn Craft Bags.
Susan says, “We delivered 250 of these adorable bags, full of eight crafts, to CHOC, Mission, and Orange. We’re doing the same currently for Thanksgiving crafts and will be doing a big drive for the December Holidays. We’ve allowed many families, charity organizations, and bored teens to engage in philanthropy in a time when we’re all looking to help out.”
In addition to these activities is their other ‘work’ which is behind the scenes in the cancer world. Susan is spearheading this work, and it has recently resulted in a collaboration with an organization based in Toronto and which will be coming to the U.S. in 2021.
FRoC chose to partner with Khure Health to accelerate the identification of patients at risk of neuroblastoma, after discovering them through the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease. Khure Health will now begin to develop an algorithm for neuroblastoma to add to the more than 50 rare diseases currently available on their clinical intelligence platform. Leveraging the power of artificial intelligence, combined with the data in a physician’s EMR, Khure Health’s Clinical Intelligence Platform will screen patients against the clinical diagnostic criteria of neuroblastoma to identify those who may be at risk.
Don Watts, president of Khure Health Inc., says, “We are thrilled to be working with FRoC to utilize the power of our AI-enabled platform to help physicians rapidly identify children potentially at risk of neuroblastoma.”
“The painful and confounding symptoms of neuroblastoma are often missed or misdiagnosed because most pediatricians will never see a case in their career – it’s that rare. Parents are their child’s best advocate and many witness the decline in their child’s behavior, growth, and well-being for months before a medical provider may arrive at the dreaded diagnosis of neuroblastoma,” says Susan.
Cathryn is now a junior at St. Margaret’s and her older sister Grace, who is 18, is a freshman at Northeastern in Boston and worked with the foundation before she left for school.
Both Susan and Cathryn can’t give enough kudos to all who supported them and the foundation.
Cathryn says, “Both my mom and I are extremely grateful for all the love and support our foundation has received from all of our friends in Laguna. Our mission for the past ten years has always been to spread love and awareness about children that went through the same experience as I did; because of all the hard work and dedication put in by our supporters, we are making that mission possible. It was so amazing to see all of the people participate in making fun craft bags for the young cancer patients in CHOC. We would like to thank everyone who has been a part of bringing joy and light to these children and fulfilling the FRoC dream.”
“Since our family is a longtime Laguna family and the community has stepped up to both support us during our daughter’s 13 month treatment and to support all of our foundation efforts through the last 10 years, we want to celebrate our 10 year anniversary and recognize those who have been a part of the work we’ve accomplished,” says Susan.
For further information about FRoC or to donate, go to www.froc.org.