In a heartwarming demonstration of how personal experience can spark meaningful change, CNBC is launching an exciting new initiative that promises to shine a much-needed spotlight on rare diseases affecting millions of Americans.

CNBC Cures, led by beloved "Squawk Box" anchor Becky Quick, represents a powerful commitment to the 30 million Americans living with rare diseases. While that number might seem modest in the world of business news where billions and trillions are routine, when we're talking about people and families, 30 million represents an enormous community deserving attention, resources, and hope.

The initiative springs from Quick's deeply personal journey with her youngest daughter, Kaylie, who was diagnosed with SYNGAP1, a rare genetic condition affecting only about 1,700 known people worldwide. When Kaylie was seven months old, Quick noticed she wasn't meeting typical developmental milestones. After visiting multiple doctors and receiving a broad diagnosis of global developmental delay, the family finally received answers just before Kaylie's third birthday through genetic testing.

Rather than letting this challenge define their family negatively, Quick has transformed her experience into a beacon of hope for others. Her story beautifully illustrates the resilience of families facing rare diseases and the importance of community support and awareness.

Today, despite the significant challenges SYNGAP1 presents—including seizures, motor skill delays, and speech difficulties—Kaylie thrives as a joyful, adventurous child. She runs, jumps, and fearlessly embraces life, particularly loving roller coasters and movement. Her spirit embodies the determination and happiness that so many rare disease patients and their families demonstrate daily.

CNBC Cures is bringing together an impressive coalition of the nation's leading researchers, physicians, regulators, and patient advocacy groups. This collaborative approach aims to identify and remove barriers that have been slowing the development of treatments and cures. The initiative recognizes that while individual rare diseases may affect small populations, collectively more than 10,000 rare diseases impact as many as 400 million people worldwide—a staggering figure that demands attention.

One of the most encouraging aspects of this initiative is its potential to accelerate diagnosis rates. Many rare diseases like SYNGAP1 go undiagnosed because symptoms aren't widely recognized and genetic screening isn't universal. Experts believe SYNGAP1 mutations alone could affect up to 76,000 Americans, accounting for one to two percent of all intellectual disabilities. Increased awareness through efforts like CNBC Cures means more families can get answers sooner and access emerging treatments faster.

The timing couldn't be better, as research into rare diseases is advancing rapidly. With genetic testing becoming more accessible and treatment pipelines expanding, there's genuine reason for optimism. CNBC Cures will amplify these positive developments, connecting patients with cutting-edge research and fostering the kind of community support that transforms lives.

This initiative proves that when media platforms leverage their reach for good, real change becomes possible. By sharing stories like Kaylie's and highlighting the dedicated researchers working toward breakthroughs, CNBC Cures is building bridges of hope for millions of families who've felt isolated by rare disease diagnoses.