Thirteen children and teens in the United States are diagnosed every day with brain tumors. More children die of brain tumors than any other cancer. These children, or ‘stars” as they are referred to by the organization, and their families are the reason
The mission of the Pediatric Brain Tumor Foundation (PBTF) is to cure all childhood tumors, to care for all families along the journey, and to help survivors thrive. PBTF is the world’s leading nonprofit dedicated to childhood brain tumor research. Since 1991, this non-profit has funded and partnered with organizations globally to fund more than $44 million in scientific discovery. The Pediatric Brain Tumor Foundation has played a leading role in fostering innovation in the field of brain tumor research. Historically, the Pediatric Brain Tumor Foundation has had a special focus on research, but much has changed over the years to ensure that the mother's and father's, siblings, and nuclear family have all the resources that they need. Out-of-pocket expenses, such as housing, transportation and groceries add up, and professional counseling, long-term rehabilitation, and other services often are not covered by insurance and pose serious barriers to patient care. The community saw financial support to families as an unaddressed need for the pediatric brain tumor population and they acted immediately!
The Pediatric Brain Tumor Foundation's Butterfly Fund, born in Atlanta in 2005, is currently serving families in need in fourteen states across the country with the largest support remaining here in the Southeast United States. The Butterfly Fund is at work across the nation with partner hospitals such as Children's Hospital Los Angeles; New York Presbyterian Morgan Stanley Children’s Hospital; and Children's National Medical Center in Washington. Right here at home, Children's Healthcare of Atlanta is receiving the greatest support from the Butterfly Fund and is touching the greatest number of families in need! In 2019 alone almost $150,000 in financial support was given to Georgia families and over the last twenty years well over $4.5 million has been given to "help families focus on survival" across our nation.
The Pediatric Brain Tumor Foundation Butterfly Fund covers expenses for rent and mortgage payments; utility bills; car loan and insurance payments; and, travel expenses associated with treatment away from home. Additionally, the Butterfly Fund assists with items not covered by insurance such as special medications, long-term rehabilitation services, hearing aids, wigs, prosthetic devices, home health services, as well as the family's mental health by providing professional counseling services that best support the entire family. A bittersweet realization for many is that the Butterfly Fund also covers end of life care and funeral expenses for the families as well.
The work of the Pediatric Brain Tumor Foundation is essential for so many reasons and the Butterfly Fund is one of the most cherished and amazing things that they, as an organization, does across the nation.
The Covid-19 Virtual Pivot
As a result of the coronavirus pandemic the Pediatric Brain Tumor Foundation, like so many not for profit organizations, has had to cancel all in person fundraising events for 2020. Founded in 2014, Starry Night Walk to Cure Childhood Brain Tumors, a twilight event which encourages communities to come together to raise awareness, build community, and raise life-changing funds for pediatric brain tumor research and family support.” Heather Held, Family and Community Outreach Manager for PBTF said that, “the lantern Lighting ceremony is truly a magical, inspiring experience for our participants and families.”
Heather further elaborated that “people love an activity-based event where people can feel a connection to the mission and that our families still needed to feel a sense if community.” This year, Starry Night will be a series of individual challenges designed to inspire communities, in a truly grass-roots movement, to support the mission of PBTF. With incredible activities ranging from an 8 hour walk or endurance challenge to honor our caregivers, to dressing up in your own superhero outfit for a week, these challenges enable everyone to shine while giving in creative and fun ways! “The beauty of our program is that it is designed to meet our fundraisers exactly where they are at,” said Heather. “They can activate their fundraising challenge how, when, and why they choose.” In celebration of the national campaign, everyone will gather together, but apart, on October 3rd, as they light their lanterns for thirty days in honor of our “stars”. Starry Night, will continue despite the current global pandemic because as Heather said, “brain tumors don’t stop for Covid-19.” Heather also asks us to remember that, “thirteen families will have their world chance today when they hear the words ‘your child has a brain tumor,’ and that it will happen again tomorrow and the day after that, and the day after that.”
For more information about the Pediatric Brain Tumor Foundation, Starry Night, or other fundraising please go to the website: curethekids.org