Our Belief: The focus of Felicia’s Courage is on making a positive treatment impact for children diagnosed with DIPG, the same cancer that took Felicia from us. Sadly, there is no cure known for children with DIPG, and despite significant effort, most children are treated with radiation, try at least one Phase I clinical trial drug and then are left without any options. This is simply an unacceptable outcome. Most parents are provided with information from the institution where they choose to have their child treated, or the one closest to their home. Most parents also are provided with advice and guidance from other bereaved parents as they desperately seek to find a way to save their child. The internet remains as a pathway to information as well as misinformation and unfortunately, can be populated by a few individuals that can do harm.
Who We Fund: Felicia’s Courage is supporting an innovative and aggressive effort to accelerate the desperate hunt for effective treatments against DIPG. Felicia’s Courage will fund the right research efforts that in our opinion and that of a panel of experts is at the forefront of medical advancement without compromising position by being linked to any one individual single drug agent. Instead, we will champion the work based on a multi-facet approach, and we can use the words of a prominent cancer research specialist who said – “fighting cancer with radiation. Chemotherapy, and Surgery alone, is like going to war with a knife, a pistol and a bayonet when the opposition has at their disposal a full arsenal supported by the air-force, Navy and heavy artillery. You just don’t stand a chance to win that battle.”
The research efforts will be specifically dedicated to DIPG, are focused upon creating personalized multi-therapy treatment protocols and not simply the one size fits all single agent clinical trials. One of the research chapters that we are funding directly supports the DIPG Therapy Advisory Council (www.DIPGTAC.com), or “G-TAC”, an independent council of medical and parental advocacy experts focused upon creating expert advisory and personalized multimodal combinatorial therapy protocols for children with DIPG. Through the use of validated DIPG cell lines, PDX mouse models, analysis of genetic sequencing data, relationships with key pharmaceutical companies and the investigation of state of the art therapeutic agents, immunotherapies and viral therapies, the research that we are choosing to fund through G-TAC will, we believe, create the foundation for the pathway to treat kids with DIPG more successfully.
To provide children with DIPG and their families greater hope that one day other parents will not have to hear the words that we heard when Felicia was first diagnosed “all we can offer is palliative care“. We had to look it up as we had never heard the words before – it left us numb. We could not believe that in 2014, the medical and scientific worlds could not help our beautiful, bright, amazing 3 year old child to have a brighter future, any future.
To provide hope that one day soon the funding research aimed at accelerating the creation of aggressive multimodal combinatorial therapy protocols for the creation of effective clinical trials is the foundation of that hope. This research conducted at the dedicated DIPG laboratory in the UK will seeks to create a pathway for survival from the diagnosis of DIPG through the underlying understanding that in order to successfully treat the deadliest and most aggressive pediatric brain tumor, equally aggressive plural pathways in combinations, properly sequenced and aggregated, must be validated.
It’s time to do something different, after 50 years of pursuing the same medical process and philosophy which has failed each and every decade. The needle of time of mean overall survival for DIPG kids has not increased in all those years. Felicia’s Courage is supporting G-TAC, a dedicated laboratory and other initiatives to pursue a different medical and scientific pathway, one that can be funded to bypass the opposition of vested interested and entrenched thinking, and offer the next cycle of kids with DIPG much greater hope and a chance of a longer life than Felicia was ever offered.
We have come to fund this particular research project as be believe that if we carry on doing what has been done in the past we cannot possible expect a different outcome.
I want you to imagine this
For one moment: it is a bright beautiful day and you have just been told that your loved one, your most precious little girl has DIPG. What will you do next is most probably the most important decision of your child life and yours. The first challenge is where will you get the necessary information to make the right decision? The doctors? The Internet? Your friends and family? While you are trying to decipher all this information the clock is ticking all the time. Most likely the clinical signs are already evident and you are being told what to do. The Doctors will tell you Radiation will buy some quality time. Really? How much? 3, 6 , 9 months ? They don’t know. Do you really consider going to Hospital every morning and putting your child under general anaesthetic to undergo radiation quality time? Some Doctors, still will tell you that you have to do chemotherapy as is the golden Standard!! For whom? Most certainly not your Child as not a single child has to date been saved by using traditional Chemotherapy .
If you are like enough to survive this first phase and taken the first decision you are now heading at the wheel of a you car down a one way system. At this stage the road is wide enough and there is the odd turn right or left, but still all heading in the some one-way direction. As you go forward in your journey the road is getting smaller and narrow, but you feel good, it all seemsto be going to plan, there are the odd good days and you start to feel the sense of false security. You start to think maybe he will not happen to us, the establishment will tell you she is doing much better than the average. Make the most of it, go on Holiday take some family time together. While all this is going on, appointment, scan, MRI , treatment sleepless night and much more. All of a sudden you realise you still down the one way system only this time is a single lane, and you can’t stop, you want to slow down but the brakes are not working very well, Than all of a sudden the road get really narrow, and you can’t fully open the door even to jump out . This time reality set in , the breaks don’t quite work , the road in a downhill slope and everyone is telling you, You have to be brave, there is nothing anyone can do, you cant even turn the car . One morning you wake up and you beautiful girls tell you “ look Daddy my leg is playing up and does not listen to me “
Then you can start to see that at the end of this now very, very narrow down hill road there is only a massive drop and no way back …….
Is there an Alternative ?
We believe so that is way, we have chosen as one of our main funding effort to be directed towards DIPG TAC research lab, and help those parents that are willing to make the right decision early on before the take the one way system, will we get to a different place? Only time will tell but we know for sure that doing what has been done in the past will always, always take you down the same place of no return, desperation and leave you empty.