In case y0u missed it: The inaugural Olivia’s Light Pediatric Rare Disease Conference
The inaugural Olivia’s Light Pediatric Rare Disease Conference took place June 2025 at the University of Virginia
The inaugural Olivia's Light Pediatric Rare Disease Conference took place in June 2025 at the University of Virginia, with the aim to improve patient care for children and families impacted by a rare disease. The conference highlighted different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole genome sequencing. The conference also highlighted other components of patient care, including, early recognition of genetic conditions, prenatal red flags, a novel pathway to access broad genetic testing, ethical considerations and communication strategies in consultation, facilitating shared decision-making, community outreach and education, as well as, the gaps and needs of patients and families.
The two-day event provided a collaborative and interactive experience between leading experts in pediatrics, parents and industry professionals. This collaboration created a welcoming environment for sharing insights and experiences.
Olivia’s Light Pediatric Rare Disease Conference is set to return in 2027 and will significantly impact the future of pediatric healthcare.
Olivia’s Light is the proud recipient of 2025 Reynolds Subaru “Share the Love” Fundraiser
Reynolds Subaru “Share the Love” partners with Olivia’s Light to support children in Central VA living with a rare disease
For a consecutive year, our friends at Reynolds Subaru chose Olivia’s Light as its local non-profit recipient for its 2025 Share the Love event, and raised $18,870 to support children living with a rare disease. Over the last two years, Reynolds Subaru’s generous efforts have totaled $42,476, which will directly impact pediatric palliative patients at UVA Health Children’s.
Reynolds Subaru raises over $23,000 to support Olivia’s Light
Reynolds Subaru “Share the Love” partners with Olivia’s Light to support children in Central VA living with a rare disease
Wow! We have such a caring and supportive community!
Thank you to everyone at Reynolds Subaru, David Penton & John Reynolds for choosing Olivia’s Light as your 2023 Subaru Share the Love charity. These funds will directly support children living with a rare disease/genetic condition. More details about that coming soon!
We are grateful for our friends and partners at Reynolds Subaru—thank you again for working hard to help us drive our mission forward. You are the absolute best.
Olivia’s Light Gifts UVA Health Children’s $50,000 towards broad genetic testing
Olivia’s Light funds broad genetic testing for children with a financial need.
Olivia’s Light gifts UVA Health Children’s Hospital $50,000 to fund broad genetic testing for qualified pediatric patients with a financial need
“Our family didn’t see this coming. I had a healthy pregnancy and a seemingly healthy baby. However, at 36 weeks pregnant I felt a decrease in movement and pushed for an ultrasound. I was induced at 37 weeks. And a few hours after Olivia was born, a nurse saw her turn blue in the nursery. We thought and had prayed that it was a one-time fluke, but multiple life-threatening events followed — so she was rushed to the NICU.”Written by: Sudha Kamath