Sometimes people wonder just what is our fund? What do we do with it? What is our plan and future goal? Well, we are three families who met under the worst possible circumstances. We all lived in the Atlanta area and had children diagnosed around the same time with leukemia. But not normal leukemia, the worst possible type of leukemia...AML. It created a bond of love and friendship not only between us but also between our children who now play together in Heaven. We are are left behind on this earth to fight a battle and share information we learned because...well, we feel we have to. Someone has to. We share information and knowledge no one told us. What we have found is there are others out there just like us. Although hard to find, they are out there. We hate finding them...it makes us sad they exist but happy at the same time because they understand our same pain and frustrations. But sad they have to know our same pain and frustrations. Weird to comprehend. But since they do exist when we find each other it is like discovering a rare treasure. When we come together our knowledge grows and our power grows and our momentum grows. We also learn that our knowledge and power might help spread knowledge and power to others and possibly lead to cures of other cancers and on and on. This is exciting. We know although change is finally happening it takes money and lots and lots of it. And AML is still considered rare. It is not only rare but also very complicated and complex and vastly different from adult AML. This fact has to be recognized and acknowledged by the medical community which is is slowly starting to happen. This knowledge has to be shared by different institutions and collaborations between these intuitions has to happen for advancements to be made in pediatric cancers. This is a process. It is happening.
Currently we work with CURE which allows us to use their organization to hold our money. We use their resources to advertise and help with fundraising and we get to use 100% of the money we raise to go toward research which they approve. We can have some say in what research they approve which comes from all over the country. CURE has a proven process to approve research and I will discuss that at another time. As a group we focus on AML research and immunotherapy in general as we feel this is what is most important to date. We currently have over $200,000 in our fund and growing. This is amazing and we plan to do big things. I know our children are proud of the work we have done and you have done to help us. Finding a cure takes time and work and lot of money. I wish there was a magic bullet but there is not. The answer to curing cancer will be specialized treatment and individualized care which now we don't have. Every child's cancer is unique but currently it is all treated basically the same which is beyond ridiculous. It is similar to being blindfolded and shooting at a target, praying you hit it but having no idea where you are aiming. It makes no sense and that is how things have been for years and years. This is what we are working to change. Meeting with other parents like we did last night-parents like Julie Guillot and Michael Copley who have such passion to fight AML and amazing Drs and researchers like Soheil Meshinchi who is making advancements in gene mapping gives me faith and hope in a future cure and change in treatment philosophies. Discussing new therapies such as T-cell therapies gets very exciting. I am looking forward to seeing the future cure happening in my lifetime. When Mary told me "If I have to die so my friends can live then I will be ok with it" I never took it literally to mean that maybe the living cells the researchers are currently studying in a lab in Seattle could lead the way to a cure. Think about it...mind blowing.
Currently we work with CURE which allows us to use their organization to hold our money. We use their resources to advertise and help with fundraising and we get to use 100% of the money we raise to go toward research which they approve. We can have some say in what research they approve which comes from all over the country. CURE has a proven process to approve research and I will discuss that at another time. As a group we focus on AML research and immunotherapy in general as we feel this is what is most important to date. We currently have over $200,000 in our fund and growing. This is amazing and we plan to do big things. I know our children are proud of the work we have done and you have done to help us. Finding a cure takes time and work and lot of money. I wish there was a magic bullet but there is not. The answer to curing cancer will be specialized treatment and individualized care which now we don't have. Every child's cancer is unique but currently it is all treated basically the same which is beyond ridiculous. It is similar to being blindfolded and shooting at a target, praying you hit it but having no idea where you are aiming. It makes no sense and that is how things have been for years and years. This is what we are working to change. Meeting with other parents like we did last night-parents like Julie Guillot and Michael Copley who have such passion to fight AML and amazing Drs and researchers like Soheil Meshinchi who is making advancements in gene mapping gives me faith and hope in a future cure and change in treatment philosophies. Discussing new therapies such as T-cell therapies gets very exciting. I am looking forward to seeing the future cure happening in my lifetime. When Mary told me "If I have to die so my friends can live then I will be ok with it" I never took it literally to mean that maybe the living cells the researchers are currently studying in a lab in Seattle could lead the way to a cure. Think about it...mind blowing.
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