Friends of Cathryn Foundation’s Annual September Fundraiser!
Children diagnosed and treated for cancer face chemo regimens and treatment that damage future fertility and ability to reproduce. While these children may survive the perils of cancer, the long term effects from chemotherapy, radiation and other agents strip them of so much and leave them with many challenges as adults. The ability to conceive is just one of many effects and its what we are attempting to support with this year’s September Shopping Event. The cost of even investigating the ability to reproduce is high let alone the process of undergoing egg retrieval, egg donors, sperm donors and IVF. Insurance do not cover the over $10K cost to explore and undergo these reproductive options so it’s up to the survivor to fund a potential family. That’s not right! Help us to fund this new field of support for survivors of childhood cancer. Shop our event or make a donation here or on our Venmo (@friendsofcathryn).
Susan Guisto and Judith G. Villablance, MD, Children’s Hospital Los Angeles wrote an article on Delayed diagnosis
Every year, approximately 1 in 10,500 children from birth to 15 years of age are diagnosed with cancer in the United States. Most pediatricians will likely encounter only one to three cases throughout their professional lifetime. Even though a pediatrician may never see a case of cancer in his or her practice, it is important to understand what to look for, how to evaluate patients and to ensure follow-up and timely referrals to specialists. As a result, pediatricians can play a critical role in minimizing delayed diagnoses to give patients the best possible outcomes.
I’m so glad to have just wrapped up my 600 mile virtual challenge from Bryce Canyon to Laguna Beach! Friends of Cathryn Foundation has been the grateful beneficiary of the 300+ participants (and their teams) who’ve raised funds for children’s cancer research while challenging themselves to complete this goal. Love the t-shirt and our logo reminding everyone of the good cause they’ve supported. Join us, anytime, to challenge yourself to 600 miles in 6 months. Worth it!
In February 2021, we launched a very exciting partnership with Endurance Magazine, the founders of many endurance athletic challenges. The Canyon to the Coast event is a 700 miles virtual challenge that takes virtual runners, riders, swimmers, spinners or cyclers from beautiful Bryce Canyon, Utah to Laguna Beach, Ca. Friends of Cathryn Foundation is the charity partner for this event and has received over $12,000 in donations from participants in the event! At each milestone along the way, participants receive a notification of the location they’ve reached along with a featured child who has battled cancer. The donations may be made at each milestone as well! Each month, more people are finding and signing up for Canyon to the Coast Challenge and helping us to meet the ever growing challenge of raising funds for pediatriac cancer research. All funds raised in this challenge will support research, notably New Approaches to Neuroblastoma Therapies founded at Children’s Hospital Los Angeles, where Cathryn was treated.
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.”
Like all serious children’s illnesses, a childhood cancer diagnosis impacts the entire family. “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.LBHS Juniors of the Lion’s Heart Service Group put together gift 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 (on right) delivers Halloween bags to CHOC Childlife team member 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.
Tomorrow – ride, run, swim, spin, hike, golf, or walk as part of the Canyon to the Coast Challenge, a 600-mile virtual endurance challenge to benefit children’s cancer research. Launching the 15th of each month, the Canyon to the Coast Challenge takes you from Bryce Canyon, Utah to Laguna Beach. Saturday, April 10 is an “all participants event” to help raise funds and awareness for Children’s Cancer research. You can help by donating to the cause at www.frocs.org.
This virtual connection event allows the participants – who reside all over the world – to run, hike, swim, spin together, on one day, and post a photo of themselves on the group Facebook page. Participants will celebrate each other in the challenge and raise awareness and more funds for children’s cancer causes supported by the FRoC or Friends of Cathryn Foundation.
Janelle Naess, founder of Laguna Beach Walks, is a supporter of the Canyon to the Coast Challenge. In 2020, she challenged herself to walk all 419 streets in Laguna Beach and completed it. With walking as an easy way to for participants to earn miles, we encourage Janelle’s walking tours for anyone interested in logging miles for Canyon to the Coast Challenge.
Guisto says, “I had decided to take on a challenge like this during COVID. I did the 700-mile virtual Tahoe to Malibu challenge that raised funds for food banks in California. I loved the combo of endurance challenge and fundraising, so I literally cold called Steve Lakey from Endurance Magazine who organized the event. I shared what we at our foundation do and asked if he’d consider a challenge that raised money for pediatric cancer. He enthusiastically agreed and allowed me to map out a course from two places that mean so much to our family. Ending in Laguna Beach is a way to bring home the event to local friends and to share the event, our city’s beauty, and cause with people all over the country. This is all virtual and another local, Jan Schrieber, has been instrumental with creating reels, videos and sharing photos on the event social media.
“We know people want to connect and are anxious to ‘belong’ to something these days. So we decided that a one-day event to connect all of our participants would be fun. So, tomorrow, April 10th, we’re getting all Canyon to Coasters, as I call them, to ride, run, swim, spin, hike, golf, or walk and share a photo on the events’ Facebook page. We hope you’ll all participate!
Well, this year isn’t going as anyone would have expected. As the year dawned, we decided to downsize, literally, our annual Mother’s Day Bags to a smaller gift which would include a gift card and a couple of items to remind our special FRoC Moms how loved they are. The $25 gift card was included in a lovely pink silk bag along with a handmade bracelet and hand painted stone.
Providence TrinityCare Foundation helped us to gift 60 moms with our gifts this last week. These moms are caring for seriously ill children which is the unimaginable for most mothers. We were also able to send 20 of our gifts to mother’s of children battling Neuroblastoma, the pediatric cancer Cathryn was diagnosed with.
Thank you Providence for your partnership. We are so grateful to have you on our team in supporting families of children fighting cancer. We found that these smaller gift bags contained as much love and meaning to us and our receipients. Thank you so very much to our donors who made this possible. You mean the world to us!
Happy Mother’s Day 2020 to all moms who are, by nature, all considered Friends of Cathryn.
In early May, our volunteers deliverd 150 FRoC Mother’s Day Bags to several local hospitals for the moms who are in patient with their child during the week preceeding Mother’s Day. City of Hope, Children’s Hospital Los Angeles, UCLA Mattel Children’s Hospital and Children’s Hospital of Orange County each received approximately 50 bags filled with lovely and generously donated items any mom would love. Our amazing donors made this possible with items donated that will specifically help mom’s endure long hospital stays at their seriously ill child’s bedside. Special thanks to our teams who filled the bags and to everyone who gave to this heart felt effort!
On July 2nd, we visited the Sant Joan de Deu Children’s Hospital in Spain to donate 50 Dolly the Dolphin (Spanish version). The wonderful volunteer staff received our donation and planned to read these books to the children in the Cancer unit while donating them to the kids and families being treated there. Written by Grace Giusto and illustrated and translated by professionals who donated their time, these books were funded by a FRoC fundraiser held in April, 2019 with Cabi, a woman’s clothing line and their rep, Linda Thornton. We are proud to share FRoC love across the world and thank our FRoCs for helping us achieve this goal!
