Becky Quick's daughter, Kaylie, has SYNGAP1, a rare genetic disorder affecting brain development.
SYNGAP1 causes seizures, developmental delays, intellectual disabilities, and autism.
Quick kept Kaylie's diagnosis private for over six years to focus on her care and well-being.
CNBC Cures is a new initiative to raise awareness and support for the 30 million Americans with rare diseases.
Quick hopes to connect communities and streamline the path to cures and better care for rare disease patients.
Why this matters: Rare diseases often leave families feeling isolated and without adequate resources. Increased awareness and community support can significantly improve the lives of those affected.
Becky Quick's decision to share her daughter's story highlights the challenges faced by families dealing with rare diseases. SYNGAP1, a genetic disorder with no known cure, requires significant care and resources. The CNBC Cures initiative aims to bring together researchers, investors, and patients to accelerate the development of treatments and improve the quality of life for those affected. Quick's public platform provides a powerful voice for this often-overlooked community.
*Actionable Takeaway:* Understanding and awareness are the first steps toward supporting families affected by rare diseases. Learn more about SYNGAP1 and CNBC Cures to contribute to the cause.
Q: What is SYNGAP1?
SYNGAP1 is a rare genetic disorder that affects brain development, leading to seizures, developmental delays, and intellectual disabilities.
Q: What is CNBC Cures?
CNBC Cures is an initiative launched by CNBC to raise awareness and support for the 30 million Americans living with rare diseases.
Kaylie's story shows the importance of awareness, community, and advocacy in the rare disease space. By sharing her journey, Becky Quick hopes to inspire others and drive progress toward better treatments and cures. Remember that increased awareness and support can improve the lives of those affected by rare diseases.
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