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Be the Hope. Go Gold this September!



September is National Childhood Cancer Awareness Month, and families impacted by this disease and supporters all over the world demonstrate their commitment by “Going Gold” and making donations to support pediatric cancer research and the families impacted.


How do you Go Gold?

It’s simple! Individuals who want to help raise awareness of the issues surrounding pediatric cancer use the color gold, the gold ribbon, and related hashtags and taglines to start a conversation and raise awareness for issues surrounding pediatric cancer. By “going gold” supporters also let families who have a child who is fighting cancer or who are mourning the loss of a child know that they are here for them.


Every September social media pages and feeds, t-shirts and ribbons, sporting events and more turn gold letting families know they have support and causing people to ask, “why gold?” which in turns give you an opportunity to explain some of the issues.


Critical Lack of Funding for Pediatric Cancer Research

Roughly 15,780 children per year are expected to be diagnosed with cancer and it is the number one cause of death by disease among children. Yet, since 1980, only three drugs (Teniposide and Clofarabine, and Unituxin for use in high-risk neuroblastoma) have been approved for use in children. And here’s the most frightening statistic, only 4% of federal government cancer research funding goes to study pediatric cancer. Source: https://nationalpcf.org/facts-about-childhood-cancer/


The bottom line is that there is very little to no public funding available for pediatric cancer research and because there is little commercial viability for drugs and devices that treat pediatric cancers, there isn’t a lot of support or investment coming from the private sector either.


So, it’s up to us! Research labs like the Children’s Brain Tumor Project which you and the rest of our foundation support, depend on the efforts of families who have a vested interest and passion for funding the research and finding a cure.


Beware! Ask Questions, Get Firm Commitments!

We, the founders of the Children’s Brain Tumor Family Foundation (CBTFF), started this organization because we knew how badly private funding of the research was needed, and we believe in the doctors and the research underway at the Children’s Brain Tumor Project (CBTP) which is a research lab located at Weill Cornell Medical Center in New York City. We are a volunteer run organization and except for very minimal marketing and administrative expenses, all the money we raise goes directly to the CBTP which is dedicated exclusively to improving treatments for rare and inoperable pediatric brain tumors.


Because we also consider it our mission and role to help raise awareness and support for families fighting pediatric brain tumors and pediatric cancers in general, we often get involved with other organizations and events. Sadly, this year, we were reminded of the need to make sure that children and their diseases are not used inappropriately in marketing for fundraising efforts that don’t support pediatric cancer research in a meaningful way. 


Recently, Brenda Ries, one of the co-founders of the CBTFF, and the mother of Sean Ries, a 12 year old boy who is battling a D-NET brain tumor, was approached by a large organization to get involved in a local event. She agreed to the use of photos of her son Sean, which were published online and in the local newspaper. The messaging around the event told supporters the event was “dedicated” to Sean and other local children who have battled cancer. And local articles declared that “a portion of proceeds from this year’s event is being directly fed into pediatric cancer research.”


So, excitedly, Brenda helped promote the event and rallied the support of TEAMSean and other local families with pediatric cancer warriors. She expressed to the committee running the event that it was really important to her that if she and her son were involved and their supporters gave to the event, that a significant amount of the funds raised by the event would actually go to funding pediatric cancer research. The event raised over $100,000 and less than 3 percent of that money went to pediatric cancer research. Yes, you read that right, less than 3 percent! The total amount given to pediatric research was less than the amount raised by the supporters of TEAMSean and the other childhood cancer families honored, and yet these children and their families were used as part of the marketing and the message to solicit support for this event.


Obviously, adults with cancer need support too, and adult cancers MUST be researched and treatments for those cancers MUST be improved as well. We understand that completely. What we object to is the use of children suffering from pediatric cancers to raise funds that aren’t dedicated to helping battle pediatric cancers.


Lesson Learned


This September, just ask questions! As you purchase gold items, as you support fundraising events, as you decide what events you and your family are going to support, or which organizations you will give to, ask questions about where the money will go and make sure it’s aligned with what you want to support.


We learned a great lesson this year and will not allow something like that to happen again. In the future we will always ask “How much of the monies you raise will fund pediatric cancer research?” and we won’t commit until we have a clear answer. And that answer must be more than 3%!


Fundraising for the CBTFF


The CBTFF and its leadership is dedicated to raising awareness and funding research that will find innovative strategies to treat rare pediatric brain tumors, offering HOPE to patients and families facing this heartbreaking diagnosis. 


Be the Hope


Your financial support makes it possible for us to help fund the groundbreaking research underway at the Weill Cornell Children’s Brain Tumor Project. In addition to going gold this September, if you are looking for an organization to donate to, then please consider giving directly to the CBTFF this September for childhood cancer awareness month.


This September we are asking our followers and supporters to consider donating $1 per day for every day in September (just $30). When you make that donation, we will send you a gold ribbon lapel pin to help you #GoGold this month and all year long. Donate Here


You can also show your support by going gold with a t-shirt, bracelet, ribbon, socks or other Gold Out Gear and display it proudly. Shop now!


If you have any questions, comments or concerns please feel free to reach out to us at info@cbtff.org


Thank you

#GoGold #BeTheHope

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Children's Brain Tumor Family Foundation
PO Box 623377
Oviedo, Florida 32762

t. +1 (973) 727-3848

OUR MISSION

To raise awareness of pediatric brain tumors and support research at the Children's Brain Tumor Project at Weill Cornell.

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