I was supported by CBTF during college. I am a pediatric brain tumor survivor, but I still have my brain tumor and a lot of medical complications from it. Still, I live a fairly "normal" life...I have my law degree, live in my own apartment, and financially independent, and live life like most other young adults. CBTF helped me connect with like-minded individuals in different stages of life and development. I am able to socialize with other college and young professional aged people, have mentors who have walked in my shoes, mentor others who need a little extra help, and feel confident about my place in this world as a survivor. I will always be grateful to CBTF and look forward to continuing volunteer and donation efforts to support more and more brain tumor survivors.
The Children's Brain Tumor Foundation has helped me find who i am! They helped me when I went through treatment and they still help today by connecting me with adult survivors. They send so many survivors to a camp in Montana and it is life changing. I don't know where I would be without the Children's Brain Tumor Foundation. They Truly are amazing!
The Children’s Brain Tumor Foundation has been a source of constant support for both myself and my family. As a long-term survivor, I have benefited from countless events and programs. From Parent/Survivor Retreats to the Heads Up Conference, CBTF has a place for everyone.
We love CBTF. they’re supportive and understanding and always make us feel like we belong. Everyone is wonderful and we do all we can to support them and their efforts. It’s nice to feel part of a community. CBTF is the best non profit organization we know!!’
I came to CBTF in 2011 as a young adult survivor of a childhood brain tumor. I attended their Heads Up Conference in Montana which was truly life changing! After getting to know the staff members there and my interest in giving back, I began working for the organization. Their support gave me confidence, independence, and a feeling of belonging - things I did not have before. CBTF is not just an organization - it is truly a warm community and lifeline for many impacted by a childhood brain tumor.
This non-profit is phenomenal. I had been diagnosed, treated and cured of a Germinoma, Germ-cell brain tumor. That was back in 2007 (with 4-1/2 cycles of Chemo-Therapy and another 2 weeks in Massachusettes for "Proton Beam Radiation Therapy" I have been involved with them through my participation in 1 if not 2 or 3 of their vacations out to Montana, to attend the TBI survivors camp, Camp Mak-A-Dream. I don't feel so alone anymore because of them. Not to mention, they are able to get fellow survivors from all across the nation, to meet each other in a live video chat. We share our individual accomplishments with each other & TRUELY support each other and give each other "props" for being able to conquer certain things.
I THANK YOU ALL!!!
(Explanation of the photo...As I mentioned I was in 11th grade when I had been diagnosed, treated & cured through both Chemo & Radiation Therapy, My entire family including my younger sister had gotten tattoos. So I said, "I NEED to get this tattoo to represent the war within my body which I had conquered through and WON!" )
(the other photo is of myself & my girlfriend Miss Lisa~Marie Grittani who is herself a survivor of a different type of Traumatic Brain Injury (an AVM or "Brain Bleed" )We edited this photo for the "Going Gray In May" campaign, bringing awareness to supporting TBI
I joined CBTF as President in October of 2017. The organization had a great reputation and the staff were devoted and industrious. But the branding, revenue, and board development needed some work. I began with expectations of it taking a couple years to move the organization forward in these areas. To my delight, it has taken less than a year. Thanks to a supportive board, an exceptional staff, and exceptional volunteers, CBTF has exceeded my expectations.
We found out about Children's Brain Tumor foundation by the social worker at the hospital. My son had surgery for brain cancer in 2011 and we were told his treatment would last a year. I left my job to be home to care for him. I've always worked and we were shocked and devastated and wondering how out family could ever get through this. The loss of my income put a lot of pressure on my husband financially. But children's brain tumor foundation helped us make our car payments so we had one less worry. The diagnosis of a brain tumor is financially deviating to most families. On top of a parent frequently losing a job because of this diagnosis you have many many more expenses than in every day life. Brain Tumor Foundation was a huge support for our family!
I became aware of the Children's Brain Tumor Foundation when I was an adult brain tumor patient undergoing chemotherapy treatment. At the time, I had two very young children. I couldn't imagine what it would be like for a child to manage this horrific disease, much less what it would be like for the rest of a family. It was then that I decided that, should I survive, it would be my obligation to do what I could to both find a cure as well as assist those families dealing with this terrible disease. Working with CBTF in its mission has been extremely rewarding for me as it offers a purpose and a way to give back to a society that to which I now have a deep connection. The organization is laser-focused on both finding a cure as well as helping families cope with diagnosis and/or loss of a child. Nobody should suffer with a brain tumor, and least of all chidren. As pediatric brain tumors are the toughest children's cancer, the world should support the mission of the Children's Brain Tumor.
The Children's Brain Tumor Foundation has given hope and support to families such as ours. Our son was diagnosed with brain cancer at the age of 14. Through this Foundation we were able to connect with other families and given useful information. With their emphasis on funding research, the Foundation fills the void left by Federal cutbacks and focuses on research specifically geared to Pediatric Brain Tumors. This gives hope to families that the future may hold better treatments for these devestating illnesses.
CBTF is an essential organization for anyone who knows and cares about a child with a brain tumor or a survivor of a brain tumor. If you want to make sure that a child or teen patient or survivor and their family receive accurate information, resources and support then CBTF provides all of that and more. The information is accurate, the staff is highly skilled, and professional. Their resource guide gives critical information to parents and professionals. Parkers Brain Storm helps young children understand what brain tumors are about in a way that is not scary and will reduce anxiety. There is a parent 2 parent program to help families connect with others facing the same challenges. There are also many brain tumor survivor support programs to help teens and young adults with the challenges they face long after treatment ends.
CBTF didn't exist when my 12 year old daughter Reina was diagnosed in 1988. We lived through her surgery, radiation and chemotherapy and heard about a group of parents that wanted to support research for pediatric brain tumors. This sounded right to me. At my child's diagnosis, the doctor said that all he had on Reins's diagnosis -- anaplastic ependymoma- was a stack of 100 journal articles. He would treat her as best he could, and since ependymoma was something like medulloblastoma, he would treat her like she had medullo. Twenty years later I can say that we got through Reina's treatment, but this does not tell anything about what we went through. I found solace in the group of parents who had dedicated themselves to funding research, and within a year, joined them. We supported each other, cheered the victories and mourned the losses. And there were many losses. But within three years, we had raised enough money to fund a research project in Interluekin II. I couldn't believe that we were actually going to pay a scientist to study a promising new treatment! In the years since, we have funded about $7 million in research for pediatric brain tumors and support for families of these kids. In fact, if my daughter were diagnosed today, she would have surgery and radiation, but no chemo -- the result of research that showed that chemo did not add to survival rates. I spent many years talking to parents of kids with brain tumors, helping them negotiate the medical system and get the best treatment for their children. When CBTF hired a social worker (we now have 2) I continued on a limited basis, and became part of CBTF's Parent 2 Parent network. CBTF has positively impacted on many families, and I am always gratified to know that CBTF was able to help a family through the most difficult of life experiences. And I am please to write that Reina survived her tumor and treatment, went on to finish school and college, got married and has a family. I often say that she recovered very well, but I am still working on my own recovery! Part of my recovery is working to make sure that children diagnosed with a brain tumor today have better options than my child had, and CBTF is my avenue for doing so.
Danny came into this world on a rainy day in October. He was born 15 minutes after we arrived at the hospital and instantly brought joy to our entire family. At 6 weeks old, Danny was diagnosed with Pyloric Stenosis. Then at 2 months old, he was diagnosed with a bi-lateral hernia. Danny was no stranger to the hospital by this time in his short life. Things settled down after a while and we thought the worst was over for him--just bumps and bruises from here on out. At 26 months old, we thought Danny had a routine sinus infection. We went to see his doctor; who examined him and sent us for a Cat Scan. Then we went to the emergency room at Schneider's Children's Hospital.. We were told that he had a brain tumor. Medulloblastoma. After 2 tumor resections, chemo, and radiation - Danny surrounded by his family left us as quickly as he arrived. Danny loved home made chocolate chip cookies, Winnie the Pooh, Robin from Batman, Buzz & Woody, Rocco's Pizza, and the movie Back Draft. He wanted to be a fireman and a golfer just like his Poppy. Danny taught us many things while he was with us and still teaches us things today. He went through so much and never complained. He always had a smile and a hug for everyone. We miss him terribly still after 11 years, but still feel his presence in our hearts everyday. In his honor, we hold a golf outing every year to memorialize him and raise funds and awareness for the CBTF. We never could have gotten through this with out the love and support from our family and friends. Because as Danny would always remind us: "You go - We go!" We have been luck enough to be able to live that motto with help of the CBTF. This organization helps families like us everyday. Families that have to journey down the path that we have traveled and those who have the path of surviorship. That is the goal. We have people from all different backgrounds that are all working together for the same common goal. We want to stop this cancer so no other child and their familes have to join us on this journey. If you have read this far, please join us in our efforts. This is a great cause that will let you know EXACTLY where the funds are going -- to research, information, and help directly to those who need it. It has been an honor to be apart of the CBTF. Timothy and Patricia Jegle