Welcome to A Kids’s Brain Tumor Cure:
If you found this website you are likely part of a community that no one ever wants to join a community that supports a child who is suffering from a ֑benign brain tumor called a Pediatric Low Grade Astrocytoma (PLGA). Some of you are just beginning your journey and some of you have been on this roller-coaster ride for quite some time. Regardless of your tenure, we hope to welcome you to ґour world, to make you an integral part of our community by inviting you to join this fight, and to help you find the facts, resources and support you need to make the best decisions for your child as you navigate the complicated and often confusing waters of the PLGA world.
When our daughter, Samantha, was diagnosed with a JPA (juvenile pilocytic astrocytoma, a type of PLGA) 10 years ago, we expected to hear that the leading experts around the country were well equipped with breakthrough treatments for these children. After all, the media was littered with articles about new cancer drugs and therapies. And given that PLGAs are the most common form of brain tumors in children (not to mention the leading cause of solid form cancer deaths in children), we felt sure that there was a quick and easy remedy at hand.
However, we found the harsh reality to be this:
- There has been little, if any, research conducted on PLGA in the past 25 years
- With no research, there is little known about the disease and NO central place for information to learn about existing options
- The standard chemotherapy treatment for pediatric low grade astrocytomas was developed over 25 years ago for cancer҅not for brain tumors
- Fundraising contributions to local childrens hospitals or general brain tumor foundations to support research do NOT directly impact our childrenҒs brain tumor types
- Perpetual lack of funding dampens researcher interest and leads to even less funding
Our shock turned first to anger and then to resolve to change the course of this disease, and thereby change our child֒s future. In the past three years we have created the ONLY portal of information about PLGAs (www.fightjpa.org) and united with other families to launch the largest foundation geared specifically to address the needs of the PLGA community, Pediatric Low Grade Astrocytoma Foundation (www.fightplga.org). We have raised funds to support 10 NEW focused research grants as well as to support the first, multi-year PLGA program at a major cancer institute.
But the truth is that even with all these efforts, we are STILL not out of the woods and we know that we can NOT do this alone. Please join our fight, for we are stronger when we unite. Each night when we sit down to dinner with our respective families, we will ask ourselves: have we done enough today to help our children beat this disease?Ӕ With your help we can give all of our children a fighting chance for a brighter tomorrow.
Board of Directors/President
98 Random Farms Drive, Chappaqua, New York 10514 Tel/Fax. 914-762-3494