Janet Demeter’s role as a mother has had most profound effect on her life, and it is what inspired her to become a writer, advocate and radio show host.
On October 28, 2011, after receiving the results from an MRI scan, Janet’s son Jack was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma), the second most common pediatric brain cancer. He was only 3 years old. Jacked passed away exactly nine months after his diagnosis on July 30, 2012.
Janet admits that living through those nine months was the darkest experience of her life, but she was fueled by the fact that she had been told that there were no solutions for Jack because “the numbers aren’t great enough for investors.” So she created Jack’s Angels Foundation to find solutions for DIPG and pediatric brain tumors. She wanted the foundation to fund creativity in scientific research, to raise public awareness with activism and advocacy, and to prioritize children’s lives in our medical system in the United States.
Fast forward to 2014, when Janet began working in the field of childhood cancer advocacy. By then she had discovered the larger picture of the community and saw early on how DIPG exemplifies some of the greatest challenges to the childhood cancer experience. While still embracing its original focus, the foundation soon began to embrace its advocacy arm, which is the larger childhood cancer awareness movement.
As luck would have it, Janet’s friend from a neighboring town (who also happens to be a media expert and produces several shows for TogiNet radio), had the great idea for her to host a radio show dedicated to helping the childhood cancer community stay connected and informed. It would serve as a platform for which members of the childhood cancer community could have a stronger voice. Janet couldn’t say no to the opportunity, and so Childhood Cancer Talk Radio powered by Jack’s Angels Foundation was born.
“Having a show where we’re actually talking about all of the unspoken fears, truths, injustices, and diseases, is truly amazing to me. In 2015 there were many cases on the news of a rare terminal brain cancer, with higher profile families, and you’d never know it was DIPG. This angered me incessantly. When we were going through diagnosis, treatment, and in our case, knowledge and expectation of death, we felt very isolated and our hearts and minds were riddled with gnawing anxiety, desperation, darkness, and fear. The unnecessary slap in the face is the idea that whatever cancer your child has is too rare for sufficient investment to produce a solution for them in x amount of time, and it needs to just stop. I feel like our having a bigger voice will absolutely do that over time. CCTalkRadio is just one of many avenues opening up,” said Janet.
Janet is proud of the guests she’s had on the show so far, many of them children with experience so unique and challenging that they should have a book made about them. There are also the parents who have the courage to talk about their experience from the depths of difficulty, of facing a certain loss, and looking ahead and watching as other children die. They know how important awareness is, and they know what it is to be stranded on Terminal Island.
“No one wants to go there, but others gain comfort in knowing they are not alone, empowered to hear how their peers have to take life and treatments and alternatives into their own hands sometimes. They know that by speaking out they are making a difference for others who will come after them.”
Janet knows that childhood cancer is a very “undertalked” issue in our world at large. Parents have been asking about the 4% of government funding (or lack thereof for pediatric cancer research), hoping for a response or a promise from Moonshot, but realized there was no government directive to assert the values of saving these children’s lives. So that’s why she feels we must continue to talk about it, and why she supports the mission of CureSearch. In fact, she recently had CureSearch CEO Laura Thrall on the show.
“Finding viable and expedient solutions for children with cancer, supporting innovative research, and connecting families with support and resources I think are shared goals integral to the mission of each party, with regard to Jack’s Angels and CureSearch. Personally I hope that CCTalkRadio can be of ongoing assistance in sharing about CureSearch’s mission and accomplishments.”
Janet is proud to be a part of the movement, and to have a show where anyone can come on and share what’s happening with them. They can also promote an event or share a breakthrough technology. To her, it’s a small world, and most people in this movement aren’t doing the work for them, so there’s not a lot of ego-even for some of these paragons for pediatric cancer advocacy. It’s an honor to think she could help people come together, and that they be pleased about it.
Janet’s hope is for her show to attract suitable sponsors so that it can continue to be available for free. Having passed the year mark, they are more actively seeking corporate sponsorship, whether for profit companies or charities. She hopes that potential corporate sponsors realize that such a consideration would be of philanthropic benefit to all concerned.
“In the field of childhood cancer there is no support that doesn’t make a difference. A smile can make a difference. Your gesture of support – whether it be moral support, human energy in volunteering, or financial – these are critical to our continuing our work. The amount of financial gift is irrelevant; the power is in the gesture, it’s in the doing. We can’t continue our work indefinitely without it. The blind eye to awareness is usually prompted by cynicism, or the anger of feeling small and insignificant, the anger of caring when it hurts and it seems a few dollars ‘isn’t anything.’ To this we say no; there are no small and insignificant gestures. Your support makes all the difference in the world!”
Learn more about Childhood Cancer Talk Radio, and visit our website to learn more about children’s cancer.
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The post How an Angel Inspired Janet Demeter to Create Childhood Cancer Talk Radio appeared first on CureSearch for Children's Cancer.