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Children’s Cancer Research Needs Funding

The reality is, without philanthropic donations from individuals and organizations like FRoC, research for children’s cancer would be abysmally funded.  The facts are that there are more breast cancer, melanoma, prostate cancer and other “adult” cancer drugs funded because there are more of these cancers than there are cancers common to children. A drug company reaches a larger patient population (and makes more money) when they develop a drug for “adult” cancers. Thankfully, the rates of survival for these cancers have moved in the right direction but it has left a gap in the funding for children’s cancers. That leaves us, those advocating for children’s cancers, to fight for dollars to fund the most impactful therapies for kids.

The other challenge is to fund the research, not the organization giving to the research. We have no overhead thus, when you donate to FRoC, 100% of your donation goes straight to our mission. 

To learn more about the state of research for children’s specific cancers, please see this link for important information you should know as you consider donating your time and money to this important cause:

cancer facts

Addressing Delayed Diagnosis of Children’s Cancer

Cancer in children is very rare. In fact, most pediatricians will perhaps only see 1 case in the term of their careers! With only 10,000 children under the age of 15 diagnosed each year, Cancer in children is not something most pediatricians or parents are thinking of when their child begins to show symptoms. However, when these symptoms do present it’s important that parents and their medical providers are aware of signs that could be cancer in order to diagnosis and get the child into treatment. 

When Cathryn was beginning to experience back discomfort, headaches and fatigue she saw her pediatrician over the course of six months. Her symptoms were confounding because she was an otherwise very healthy and happy little girl. It wasn’t until another doctor did a blood test that anything was suspected. As her back pain remitted and returned she one day told me “it hurts when you hug me tight”. My alarm bells went off and I insisted on an x-ray. That x-ray showed an avocado sized tumor in her back that had metastasized throughout her body by that time. I often wondered how we missed it, what if we’d caught it sooner, what if, what if, what if……it haunted me. Turns out, that same question haunted many parents like us. 

In 2020, I developed a survey of other Neuroblastoma parents to ask about their diagnosis journeys and what symptoms their child experienced and which were missed or misdiagnosed. 300 parents shared eerily similar journeys as ours: months of persistent symptoms ruled out as constipation, growing pains, pulled muscles, attempts to get attention, temporary viruses. I gathered a list of the ten most common symptoms and most common misdiagnosis. I also learned about the number of doctor appointments and the length of time between the onset of symptoms to the point of diagnosis. All of this information, plus a emotional and factual testimonials from over 180 parents were put into a presentation called Improving the Time to Diagnosis and is now being shared with medical providers, pediatricians, educational institutions and other members of the children’s cancer community. We’re partnering with other cancer parents and organizations in the UK to share this effort, get the word out and improve the delays to diagnosis in all children’s cancers. Our work is just beginning and we look forward to making great progress in 2021. 

One of the steps we’ve taken is in developing pieces to educate the medical community on what to look for as a possible symptom of cancer. 

On February 7th, 2022 Susan presented Improving Delays to Diagnosis of Children’s Cancer to Los Angeles based Kaiser Permanente Pediatricians. Along with Dr. Scott Coven, Susan shared these practical steps Pediatricians can take to improve diagnosis of all children’s cancers: recognize symptoms that could be cancer, effectively partner with parents,  and collaborate with peers to obtain second opinion. Pediatricians attending the virtual presentation earned CME credit. 

Covid Relief

 When local Children’s Hospitals were impacted by Covid, playrooms were shut down. These playrooms are run by Volunteers and provide hours of crafting, reading, playing for children who rely on this break from treatment and boredom. Until such time that Volunteers may return to hospital playrooms, Friends of Cathryn Foundation is providing holiday themed FRoC Craft Gift Bags to local children’s hospitals. These bags are filled with fun crafts for children to do in their rooms and are funded and put together by local philanthropic groups who support FRoC. We are grateful for these partnerships and thank them for the joy they bring to hundreds of children’.

 

We Build Partnerships to Create Awareness and Raise Funds

At Friends of Cathryn Foundation, we believe a collaboration with similarly focussed organizations to be the most effective approach in creating awareness and raising funds to cure kids with Neuroblastoma.  We have primarily supported the research work of NANT,  New Approaches to Neuroblastoma Therapy (www.nant.org), a consortium of children’s research hospitals throughout the US, Australia and Canada. This partnership includes the primary oncologists who oversaw Cathryn’s treatment and the team responsible for developing therapies which have advanced Neuroblastoma treatment in recent years. Susan sits on the Parent Advisory Council of NANT, attends their annual research meeting, and is active in the Parent Support Group at Children’s Hospital Los Angeles. Susan also volunteers at Children’s Hospital Orange County, the hospital at which Cathryn received most of her treatments.

Examples of our Partnerships and Collaborations: