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2012 Top-Rated Nonprofit

Brain Tumor Foundation for Children, Inc.

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Nonprofit Overview

Causes: Brain Disorders, Cancer, Health

Mission: The mission of the Brain Tumor Foundation for Children is to provide financial assistance, social support, and information for families of children with brain and spinal cord tumors; fund research projects that improve treatment options and search for a cure; and raise public awareness of the disease and advocate on behalf of children who are affected.

Results: In the 2012 fiscal year (7/1/11 – 6/30/12), we provided $360,000 in emergency financial assistance for 300 families in the southeast through our Butterfly Fund. Since being established in 2000, this one program has provided over $1.8 million in assistance for hundreds of families – helping with items that include rent and utilities, car payments and repairs, gasoline, treatment-related travel expenses, and much more. We will continue to “Help Families Cope,” as long as needed through this and other programs that are described on our website.

Target demographics: Families of children aged birth through 21 years in the southeast who have brain and spinal cord tumors.

Geographic areas served: Southeast

Programs: The Brain Tumor Foundation for Children provides a financial assistance program (Butterfly Fund) for the families of children treated for the disease at certain hospitals in eight southeastern states (GA, FL, LA, MS, AL, KY, SC, TN); it provides information and education for families; it provides hands-on support to families (mostly in the state of Georgia); it supports research for a cure.

Donor & Volunteer Advisory

This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

24 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

For the families and children who are fighting Brain Cancer you can't beat this organization! Resources for financial help, gatherings of the families that keep us all bonded with special event activities, information and comfort for any situation,and staff that has always been there when we needed someone to listen. We couldn't have made it this far with out you! Thank you! \
Olivia diagnosed with two brain tumors at age 4.5 (2008), grew a new one in 2012 and a strong survivor!

Client Served

Rating: 5

In July of 2010 my daughter was diagnosed with a brain tumor. We were completely lost! At this point our lives were changing so quickly! Within three months I was no longer able to work, my daughter needed me to be with her. After three years we continue to fight! Our fight would not be possible without the Brain Tumor Foundation for Children! There are times that we feel like we have the weight of the world on our shoulders trying to fight with our daughter, but, one thing we have never had to worry about it loosing our home or having no electricity or gas money to make it to our 200 mile car trips to the doctors that can help our daughter. But, most important are the days that we just needed to have someone to talk to and those are the days that you can call the foundation and they know you by name and your child and your situation. It is an organization that we have been so very blessed to have! I wish that I had the words to express our gratitude!!!

Laura175

Client Served

Rating: 5

My family would be very lost if it weren't for this foundation. They went over and beyond anyone else could have to help my family and I. My daughter loved receiving mail that was very enthusiastic and kept us going.

Client Served

Rating: 5

This foundation is very proactive in reaching out to families. Their presence is felt in the hospital and brain tumor clinics here in Atlanta. They work with other organizations to bring together meaningful resources to families. They are such a blessing to my son. He has had his brain tumor since birth. He has endured two surgeries. Because of the surgeries good brain tissue was sacrificed to fight this tumor. After all the pain and disappointments, It's such a joy to have an organization that loves on our children and supports the parents. The Brain Tumor Foundation for Children in their excellent way helps to quiet the hurt of fighting these tumors for our children.

1

Client Served

Rating: 5

My daughter was diagnosed with a brain tumor at 19 y/o on 29 Jul 12. They do not know how long she's had it. She had two surgeries to remove the tumor and she is currently going through radiation therapy then on to chemotherapy. She has an 11 month old son. Through my social worker the foundation has provided us with $350 in gas cards as we have had to travel back and forth at least once every two weeks for two hours for her doctor appts. Without the foundation we would be hurting as I nor my daughter are currently working; since I have exhausted all of my leave from work being by her side. We also are struggling to get her disability approved so the foundation is truly a God sent organization. They are willing to help with bills, car repairs, etc. if you just ask. We are truly grateful and thankful for God and him providing donors with such caring hearts. I am sure other families are just as grateful.

Client Served

Rating: 5

This past year out daughter was diagnosed with a rare brain tumor. Immediately the foundation reached out to us offering support in a number of ways. It was assuring to know we were not alone in this battle. Our daughter is admist receiving treatment and the foundation has reached out to our family and older daughter.

Client Served

Rating: 5

December of 2007 i received a call while my child and i were at st jude.The lady i spoke to was so kind sweet and thoughtful was as if a family member had called to offer help.Was a great burden lifted the finacial support was just the begining , they would call and check on us regularley they even sent my other child a gift for the holidays .And when i lost my son they send a gift i keep it in a special place so thankful for all they have done an do each day may god bless the btfc and as long as i walk this earth you'll have my support thank you.

1 Trudy C.

Client Served

Rating: 5

My 9 year old daughter Zoe was diagnosed with Glioblastoma Multiforme (GBM) brain tumor and had to have immediate resection surgery at OU Children's Hospital in April 2009. According to protocol she would also need radiation and chemotherapy treatment so in order to be closer to family we decided to relocate and continue her care at Miami Children's Hospital, Florida. For over a year Zoe did very well but the tumor came back and she had to have a second surgery in October 2010. It was then, through the staff at MCH that we learned of BTFC. BTFC stepped in and helped us when we didn't even realize that we needed help! They assisted us in paying several bills and travel expenses, which was well needed since we lived 2 hours away from the hospital and had other children. Their help allowed my husband and I to focus on Zoe's recovery as this time she also needed occupational, physical and speech therapy. When we returned home from the hospital, our mail man delivered huge box to our doorstep. Inside we found all sorts of goodies for not only Zoe but enough to share with her siblings. We were all excited, I only wish you could have seen her dimple filled smile which lit up the room! Since then BTFC kept in touch with us through emails and cards. Sadly Zoe passed away on December 11, 2011 at age 12 due to a third occurrence. Again, BTFC was there to assist us with several of our living expenses and also Zoe's final expenses. This time we focused on our broken hearts and those of our other children. You see, when you no longer have to go back and forth to the hospital for check-ups and treatments, when you no longer have to make appointments and fill prescriptions, when doctors no longer call and your extended family goes home it intensifies the fact that your child is gone. Then one day when our world had stopped, I heard the doorbell ring and looked to see our mailman holding a small box. Inside was a beautiful angel that was sent to our family from BTFC. It made our day, as was a gentle reminder that someone still remembered us, that someone still cared and that there are many other families like ours still fighting for their kids battling brain cancer.

Client Served

Rating: 5

The Brain Tumor Foundation for Children have been there for use over the last 10 years and we are so thankful for this organization. My son, Blake Carpenter, was diagnosed in January of 2003 with a craniopharyngioma. He has been fighting this brain tumor and the side effects for the last 10 years. Sherry Samuels and Mary Moore along with other volunteers from BTFC have been emotional and financial support for us over the years. There have been times when we needed a hug, smile, listening ear, surprise, or help with gas throughout the years and they have always been here for our family. Also, the BTFC has provided just simple FAMILY FUN for us and so many other families and provided us with an opportunity to meet other families that are also living a roller coaster life. I am thankful for BTFC and so happy to be blessed to be a part of this heartfelt organization!

Client Served

Rating: 5

What a wonderful organization! We are so thankful for all the support from initial diagnosis to relapse and eventual death of our son. Mary Moore and her team mean so much to our family! Sincerely, Jacque Porter

Client Served

Rating: 5

The Brain Tumor Foundation for Children is a godsend for families of children with brain/spinal cord tumors. Our son was diagnosed at the age of 8 with a large brain tumor. Thankfully the resection surgery was very successful but he endured many post-surgery complications. The BTFC was very helpful in connecting us with other families who were in the same situation, as well as providing information and support to help us through the entire ordeal. I'm happy to report that my son is now 18 years old and is a freshman in college. Life is not without its challenges but the BTFC is still there to help us.

1

Client Served

Rating: 5

Evan Carswell, my son, was diagnosed at 15 with a rare aggressive brain cancer he died at 16, with his sweetheart Faith (diagnosed with a brain tumor). They were certainly not their disease however BTFC is definitely part of our families. Here’s partly why.

The financial burden of the disease is monumental for families. It is an easy choice between paying $400 for an electric bill and buying two doses of medicine. (or $30,000 for 60 shots) The medicine came first – Evan’s health came first – and our electricity was cut off. Thanks to BTFC’s wonderful Butterfly Fund, our utilities were restored – not once, but twice. And when I called to get donation envelops for the funeral they asked for Evan’s funeral expenses. It felt too much and I protested… but so grateful again for their donation….

Once the treatment starts you realize that in a few short weeks your child will not feel well. About one month into treatment, Evan gave us a ‘bucket list’ – the things he wanted to do in life. As I read it, I prayed that he didn’t see the disappointment and despair in my face as I realized there was no money for fun…no money for making great memories. Having BTFC pay a $30 water bill may seem insignificant to you, but for our family it provided a night at the movies…a night to make memories. BTFC enables families of children with brain cancer a few moments to devote making life somewhat ’normal’ during a period of time that may be the remainder of their life.

Research is vital and my son felt so strongly he donated his brain tissue and BTFC donates too! It is important to know its not that our son died, but that he lived and lived well - with laughter, love, courage, a little romance and faith….he lived his best. Cancer does not change these children…it reveals them.

We are forever grateful for the Brain Tumor Foundation for Children and those who support them! You would need a whole other nomination for the staff there… we are forever joined by my sons illness and death… Ed and I are proud to be their friend.. The staff are just incredible. I just don‘t see how they do so much.

Any words we could think of really mean nothing. We pray the Holy Spirit will translate those feelings we hold in our hearts … but are unable to verbally express “Evan’s Proud Mom and Dad” Jennifer and Ed Carswell


lasheka76

Client Served

Rating: 5

My daughter was diagnosed with a brain tumor that was discovered to be medulloblastoma brain cancer at 11 months old. Being a single parent, I had to leave everything, including my other 4 children, to be with my baby and care for her at the hospital. BTFC came into our lives and offered caring, compassion, and support that you rarely find. It wasn't just financial. It was emotional. They weren't just there for my daughter. They were there for my other children as well. They know that cancer affects the entire family. They are concerned about "their" kids. They are special people who go above and beyond for complete strangers. I will forever be thankful for them. They shined a light in the midst of all our darkness. Their purpose and cause couldn't be more perfect!

Nicole41

Client Served

Rating: 5

My 18 month old daughter was diagnosed with a brain tumor September 2011. It was the most devastating news any parent could ever hear. She underwent a 9 hour surgery and yak fully the sergeon fully resected the tumor. Our family then had to go to Jacksonville for 6 weeks of radation treatment. The brain tumor foundation helped our family tremendously during this time helping us pay for our bills back at home. It was a super easy process and they made everything simple of us...which is a big deal because nothing was simple anymore. I am happy to say that our daughter is doing very well 1 year later. The brain tumor foundation helped is in a way that we couldn't even imagine. To top it off they still send Anabella cards and letters during holidays and her birthday just to say hello and to let us know they are thinking of us! We love the brain tumor foundation, greatest non profit out there!! Xoxo -Spadaro Family

Erica17

Client Served

Rating: 5

Our daughter was suddenly diagnosed with anaplastic ependymoma at 10 months old. Prior to resection she suffered a global brain injury due to hydrocephalus caused by her tumor closing off her third and 4th ventricles. She is now home from the hospital but has a g-tube and feeding pump, trach and suction/humidifier/oxygen condenser, & pulse-ox. The Brain Tumor Foundation for Children's Butterfly Fund is helping us get an emergency power generator so this winter and during other power outages that are common in our area we can keep our daughters equipment up and running and not have to go to the hospital with every outage. We are so grateful to them for this as otherwise we would have great difficulty in paying for one ourselves.

Client Served

Rating: 5

In 2001 our son was diagnosed with medulla blastoma. BTFC was there to help us with information, presence, and supportive events. After ten years cancer free, David's cancer returned in 2011 - this time he is considered an adult, but BTFC was there because once you are a part of the "family" you are always a part. Once again, support was given in presence and this time financial to help with gas expenditures. Without this help we would have been in a terrible situation (like it wasn't terrible enough). Even though we lost our son this time, BTFC is still supportive in celebrating our "angels" lives. It is a very personal nonprofit that works at getting to know the people they help which, at a time when friends seem to disappear, is probably the greatest support they give.

Client Served

Rating: 5

In 2006, our daughter Tahjany was diagnosed with a brain tumor and it changed our lives tremendously. The Brain Tumor Foundation for Children were the ones who helped us pull through difficult siutations inside and outside the fight of the cancer. Thanks BTFC for all that you've done for our family. We Love You All! R.I.P. Tahjany, The Duncans.

Client Served

Rating: 5

BTFC takes personal care of each family they serve. They have been a lifeline to me as a momma of a brain tumor patient. They give us opportunities to do events together as a family. Time together as a family is priceless considering we are usually split up due to doctor visits, hospital stays, and therapies. BTFC also assists us financially when the burdens of brain tumor expenses become overwhelming and impossible. Cannot say enough good things. NOTHING negative. LOVE BTFC!!

Client Served

Rating: 5

Our daugher, Julia, was 8 when she was diagnosed with a brain tumor. It was a glioblastoma, and very aggressive. At the time, we lived in St. Louis, MO. One her wishes was to go back to New Orleans, where we are from, to be with our family. Not only did the BTF help us with rent, car payments and other expenses, they kept in touch with us every step of the way. Our baby girl has gone to be with our Savior. After she died, they sent us a lovely angel figurine, I will always keep it next to her picture. We still get personal emails from them, and I can't tell you how much it means to me that they will always remember my wonderful girl. This is a very special organization. Cathy W

Angie18

Client Served

Rating: 5

October 2011, my 14 year old son Zachary, had some nausea and problems with his vision. His pediatrician ordered an MRI of his brain just as a precaution. I never expected for them to find anything. To my shock, he was diagnosed with an inoperable tumor on his brain stem. We were sent 140 miles away to Vanderbilt Children's Hospital in Nashville, TN for treatment. After taking a heavy dose of steroids for a week to bring the swelling down, he had a brain biopsy at Vanderbilt. Three weeks later, he started six weeks of radiation. I was told by my employer I was eligible for FMLA. But I only had 2 weeks of vacation left, the rest of the time would be without pay. As a single mother, I had no other income. The social worker at Vanderbilt referred me to the Brain Tumor Foundation. I submitted our expenses to the organization through the social worker. The Brain Tumor Foundation paid our house payment and utilities while we were in Nashville allowing me to focus on taking care of my son. They were truly a godsend. I can only imagine what would have happened to our home without them. We have been truly blessed! The radiation shrunk the tumor by half. Zachary has an MRI every 3 months at Vanderbilt to monitor for change. We are so thankful for the help!