Thirteen children and teens in the United States are diagnosed with brain tumors every day. More children die of brain tumors than any other form of cancer. 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. Historically, the PBTF has had a special focus on research, but much has changed over the years to ensure that the mothers and fathers, siblings, and nuclear family members 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 Pediatric Brain Tumor Foundation's Butterfly Fund, born in Atlanta in 2005, is currently serving families in need in 14 states across the country with the largest support remaining here in the Southeast United States. 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 20 years well over $4.5 million has been given to help families focus on survival across our nation.
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 Covid-19 Virtual Pivot As a result of the coronavirus pandemic the PBTF, 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 says, “the lantern lighting ceremony is truly a magical, inspiring experience for our participants and families. People love an activity-based event where they can feel a connection to the mission and that our families still needed to feel a sense of community,” she adds. 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,” said Heather. “They can activate their fundraising challenge how and when they choose.” In celebration of the national campaign, everyone will gather together, but apart, on October 3, as they light their lanterns for 30 days in honor of the “stars”. Starry Night, will continue despite the current global pandemic because as Heather says, “brain tumors don’t stop for Covid-19. Thirteen families will have their world change 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 CureForKids.org
