Since its launch in April, the foundation has dedicated nearly $1M for research and rallied a growing community
EDEN PRAIRIE, MN / ACCESS Newswire / October 16, 2025 / Helen’s Pink Sky Foundation will take center stage at one of the world’s premier sporting events this fall, with its logo set to appear on BWT Alpine Formula One Team’s A525 for the Formula 1 United States Grand Prix in Austin, Texas, October 17-19. The high-profile placement will showcase the fight against Batten Disease to millions of racing fans worldwide, marking a major milestone in the foundation’s mission to accelerate research and provide hope for affected families.
Helen’s Pink Sky Foundation was founded in April 2025 by the Born and Schneider families after Helen was diagnosed with Late Infantile Batten Disease (CLN2). The rare genetic disorder affects only 2 to 4 children in every 100,000 births but devastates families with rapid neurodegeneration, seizures, vision loss, and premature death. The foundation is dedicated to funding groundbreaking research, raising awareness, and supporting families impacted by this devastating condition.
“No parent imagines having to fund medical research to save their child, but that’s the reality with Batten Disease,” said Stephanie Born, Helen’s mom and co-founder of Helen’s Pink Sky Foundation. “Every dollar we raise is about more than science – it’s about buying time, creating hope, and fighting for more birthdays for Helen and all CLN2 kids. The momentum we’ve built in just a few months proves what’s possible, but it also reminds us that we can’t stop, because our children can’t wait.”
Since its launch earlier this year, the foundation has already invested nearly $1 million into world-class research efforts, supporting institutions such as Latus Bio, the Children’s Hospital of Philadelphia, and the University of Minnesota. These collaborations are advancing promising gene therapy and neurological research, while the foundation continues to rally a growing donor community and raise international awareness to ensure no family faces Batten Disease alone.
“Every partnership, every donation, and every gesture of support matters,” said Nick Schneider, Helen’s uncle, a founding member of the Helen’s Pink Sky Foundation, and President and CEO of Arctic Wolf, a Minnesota-based cybersecurity company, partner of BWT Alpine Formula One Team. “Since April, the progress we’ve made has shown what’s possible when we work together – nearly a million dollars committed to cutting-edge research in just months. BWT Alpine Formula One Team is giving us a chance to show the world what momentum looks like, and I am grateful to them for helping us carry this fight onto this global racing stage.”
“We are proud to support our partner and friends at Arctic Wolf this weekend to raise awareness for Helen’s Pink Sky Foundation and the much-needed medical research to combat Batten Disease and to support those affected by it,” said Guy Martin, Global Marketing Director, BWT Alpine Formula One Team.
The foundation has set a goal to secure an additional $1 million in funding over the next 12 months. Supporters can help make this possible by attending the inaugural Helen’s Pink Sky Gala on October 25, 2025, or by contributing directly at Hope4Helen.org.
About Helen’s Pink Sky Foundation
Helen’s Pink Sky Foundation is committed to advocacy, research, and family support in the fight against Batten Disease (CLN2). Inspired by four-year-old Helen Born, the foundation funds groundbreaking studies, provides resources to affected families, and raises awareness for one of the most devastating pediatric genetic disorders. Learn more at https://www.hope4helen.org/.
Media Contact:
Ilina Cashiola
Ilina.cashiola@arcticwolf.com
202-340-0517
SOURCE: Helen’s Pink Sky Foundation
View the original press release on ACCESS Newswire
