Optional question where you can tell us more about you, your child, your reasons to be here, or simply introduce yourself.
My son Cade died of a brain stem PNET tumor in 2000, he was only 2 years old. After his death I founded the Oklahoma Brain Tumor Foundation. We are a nonprofit public charity that provides education, supportive services and advocacy for children, adults and caregivers to improve their quality of life and help find a cure. We do this through an integrated approach that combines financial assistance, patient navigation, educational resources, wellness classes and policy analysis to help families concentrate on beating the disease and not on the everyday challenges this disease brings on a family.
We lost our son to a PNET stage 4 at age 2 as well. He went through 8 months of treatment, time I now treasure. If there is anything I can do to help with your organization, let me know. The fight is strong in my heart. Tina (angel Seths momma)
What would you think about trying to get the Blazers to do a fundraiser either for CureSearch or maybe Allie's House or OCCA? The NHL does Hockey Fights Cancer and they sell things at the games that a portion of the money goes to that. I was thinking about something similar for our little CHL team. I could use some help though. I have never done anything like this and it seems to be right up your ally. :) Let me know what you think....
I'm sorry to hear about your son. We have a little friend, Morgan from Oklahoma City who's been fighting brain tumor since 2002. My son is a relapse of Neuroblastoma and I hate cancer of all kinds.
Elena mom to Brian
Hello to from one Okie to another. Cade is adorable! I wish we had a foundation, like OKBFT for Wilms Tumor (what my son had). Thankfully Ally's House helped. Once I am out of school, in 3yrs, I may talk to you about starting something. Thanks for all your hard work!
I would like to share 2 blogs that I recently started writing.
Brain Tumor Buzz: includes information of all sorts on brain tumors. Latest news, noteworthy treatment information and thoughts of mine. Check it out and let me know what you think.
Be Your Own Patient Advocate: This blog is for patients and caregivers. We discuss those things that you typically don't know before you start the treatment journey in hopes we can help you advocate for yourelf and your loved one when their is an absence of a professional in your life to take your hand and walk .with you down the road.
Leave comments and let me know what you think and what information you would like to see posted.
welcome to PAC2. I am so sorry for your loss of Cade. As you know there are simply no words.
I hope you will explore and figure the site out, then begin contributing thoughts, ideas and helping us in the fight....we need leaders....AJs Dad