Children's Brain Tumor Foundation Inc

Rating: 5 stars   6 reviews

Issues: Health, Cancer

Location: 274 Madison Avenue Suite 1004 New York NY 10016 USA

Mission: The Children’s Brain Tumor Foundation (CBTF) was founded in 1988 by a group of dedicated parents, physicians and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors.

Write a Review
Invite people to share their experience with this nonprofit!

Filter Reviews by Role

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

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!

If I had to make changes to this organization, I would...

There is nothing I would do to change this organization except hope to find more donors to aid in their work

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

33 people found this review helpful

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.

I've personally experienced the results of this organization in...

the eyes of the children and families it serves

What I've enjoyed the most about my experience with this nonprofit is...

the opportunity to work with energized and focused individuals.

The kinds of staff and volunteers that I met were...

intelligent, confident and caring.

If this organization had 10 million bucks, it could...

finish or nearly finish funding the true baseline building block that would allow researchers a much better chance of finding cures for the multitude of pediatric brain tumors.

When was your last experience with this nonprofit?

2009-2-01

Was this review helpful? 
Rating: 5 stars  

32 people found this review helpful

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.

I've personally experienced the results of this organization in...

thankful families, new treatment focuses, new programs for survivors of brain tumors

What I've enjoyed the most about my experience with this nonprofit is...

meeting people with the same needs and commitment to the same goals- better survival rates and quality of life for children with or survivors of brain tumors

The kinds of staff and volunteers that I met were...

compassionate, responsive, informed

If this organization had 10 million bucks, it could...

fund more research, treat more families to summer camp and other recreational activities

When was your last experience with this nonprofit?

2009-1-01

Was this review helpful? 
Rating: 5 stars  

39 people found this review helpful

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.

I've personally experienced the results of this organization in...

Helping to ease the difficult road of families facing the challenges of brain and spinal cord tumors. They have also raised lots of money for research.

What I've enjoyed the most about my experience with this nonprofit is...

Anything is possible when people who care share a goal and a vision

The kinds of staff and volunteers that I met were...

Well trained, compassionate, and highly dedicated

If this organization had 10 million bucks, it could...

Provide more outreach and care for more families

Should this review be counted for a specific campaign?

Linda Wachtel

When was your last experience with this nonprofit?

2009-2-01

Was this review helpful? 
Rating: 5 stars  

29 people found this review helpful

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.

I've personally experienced the results of this organization in...

There have been changes in the way children with brain tumors are treated because of CBTF supported research. Survival rates have improved

If I had to make changes to this organization, I would...

encourage everyone to get involved and continue the progress that CBTF has made

What I've enjoyed the most about my experience with this nonprofit is...

the feeling that I am making a meaningful contribution that will impact a child's life, and working with like-minded people who feel the same way

The kinds of staff and volunteers that I met were...

the most dedicated and capable people. I am proud to know them.

If this organization had 10 million bucks, it could...

hire the best and brightest to solve the mystery of brain tumors and find a cure!

Ways to make it better...

we had more people to help us do this important work.

In my opinion, the biggest challenges facing this organization are...

the fact that families of newly diagnosed children are busy taking care of their kids and often are not able to take on the challenges we face in finding a cure. These families would be our best advocates

One thing I'd also say is that...

I never thought I would live to see CBTF make a difference in the way brain tumors are treated in children. But changes have taken place, survival is edging up, and our work has begun to have an impact. I am priveleged to witness this in my lifetime.

When was your last experience with this nonprofit?

2009-2-01

Was this review helpful? 
Rating: 5 stars  

35 people found this review helpful

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

I've personally experienced the results of this organization in...

the faces of families and friends.

If I had to make changes to this organization, I would...

continue the grat work it has already done.

What I've enjoyed the most about my experience with this nonprofit is...

the many new programs they have put together over the years.

The kinds of staff and volunteers that I met were...

some of the hardest workers and compasionate people.

If this organization had 10 million bucks, it could...

fund more research to end/control this cancer.

Ways to make it better...

more people knew of this cancer before a family or friend was diagnosed.

In my opinion, the biggest challenges facing this organization are...

awareness.

One thing I'd also say is that...

the CBTF understands the where and why most people go through in dealing with both the cancer and the treatment.

When was your last experience with this nonprofit?

2009-1-01

Was this review helpful?