Join the Fight Against Rare Pediatric Cancers with the Isabella Santos Foundation

Charlotte, NC – August 27, 2024 - The Isabella Santos Foundation (ISF), a 501(c)3 rare pediatric cancer nonprofit organization, is spearheading efforts this September during Pediatric Cancer Awareness Month. Their month-long campaign aims to raise awareness and funds for rare pediatric cancers, uniting the community to support children and families facing these devastating diseases.

Rare pediatric cancers, while individually uncommon, collectively affect thousands of children and their families each year. The statistics are alarming: less than 8 percent of the National Cancer Institute’s funding goes towards pediatric cancer research, with an even smaller fraction allocated to rare pediatric cancers. This chronic underfunding leaves families with limited treatment options and heartbreaking outcomes.

"No parent is ever prepared for a cancer diagnosis in their child. It is a devastating blow that shatters the illusion of safety and normalcy," said Erin Santos Primis, Founder and Executive Director of ISF. "To truly make a difference, we need to see the same results of the lymphoma and leukemia communities, which have made remarkable progress thanks to robust funding and research. By rallying together, we can bring rare pediatric cancers into the spotlight."

ISF’s "Go Gold for Kids with Rare Cancer" campaign aims to educate and engage the business community and its patrons all month long, providing opportunities to support children battling rare pediatric cancers. Over 30 businesses and organizations have pledged their support through donation roundup programs, special promotions and in-store events. Here are a few examples:

Additionally, community members can join the effort by purchasing and displaying purple and gold bows on mailboxes, doors, offices, business establishments and college dorms. These symbols of hope are available for purchase for $15 here.

To conclude the month-long campaign, ISF has teamed up with Goldie’s Charlotte to host a special concert with Southside Watt on September 30. The after-work event will feature an extensive menu of bar bites and brews, signature cocktails and raffle prizes. Tickets are available now, with general admission at $75 and VIP access at $150.

For more information on how to get involved or to purchase tickets for the Go Gold at Goldie’s concert, visit ISF’s website. Together, we can ignite our community to make a profound difference in the lives of children battling rare pediatric cancers.

Established in 2007, The Isabella Santos Foundation (ISF) is dedicated to eradicating pediatric cancer's devastating impact while honoring the legacy of Isabella Santos, a courageous neuroblastoma fighter. Through the TORCH initiative, ISF provides funding for clinical trials, basic science and translational research, and survivorship support at medical institutions across North and South Carolina, igniting transformational outcomes for rare pediatric cancer heroes. 

For nearly two decades, ISF has raised over $14 million to expand research and treatment and support affected families. Partnering with Atrium Health and Levine Children’s Hospital, ISF funded clinical trials, developmental therapeutics and a top-tier MIBG therapy suite—one of 20 nationwide. In 2020, the Isabella Santos Rare & Solid Tumor Program launched with Levine Cancer Institute, aspiring to be a global hub for children with solid tumors and rare cancers.

Originating from one girl's mission, and carried forward by her loving mom, her family and the support of the Charlotte community, ISF's impact thrives and its ability to transform lives will endure for generations. Join our commitment to bring hope, healing and progress to young pediatric cancer heroes and their families.