What does International CCHS Day mean to our family?

Hi, family and friends!

It’s that time of year again! Every fall, on the fourth Saturday of September, we join the global CCHS community in recognizing International CCHS Day. It’s a day dedicated to raising awareness, advancing research, and bringing hope to individuals and families navigating this ultra-rare disease.

As many of you know, Greta was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) shortly after she was born. CCHS is a rare disorder that affects many functions of the body’s autonomic nervous system. The most recognized symptom of CCHS is the inability to control breathing, especially during sleep, resulting in the need for lifelong ventilatory support.

The early days after Greta’s diagnosis were filled with so much worry and uncertainty. Thankfully, we found community in the CCHS Network, a group of families who understood our experience, shared their advice, and gave us hope.

As we approach Greta’s fourth birthday, some of those early fears have begun to fade into memories. Greta talks, goes to school, and loves animals, The Little Mermaid, and cars (much to Ryan’s excitement). None of that would have been possible if a group of CCHS families decades before us hadn’t come together, pushed boundaries, and never stopped fighting for better.

Every donation to the CCHS Network helps families in need, funds research for safer treatments, and moves us closer to a cure. Thank you for supporting our CCHS community and giving us hope for brighter tomorrows!

Love,
Maddie, Ryan, & Greta

What Is CCHS?

Congenital Central Hypoventilation Syndrome (CCHS) is an ultra-rare, lifelong genetic disorder that affects the autonomic nervous system, including the body's automatic control of breathing. People with CCHS do not breathe adequately on their own, particularly during sleep, and require lifelong ventilator support or other forms of assisted breathing. Because CCHS can cause heart rhythm abnormalities, digestive complications, an increased risk of neuroblastoma, and other serious health concerns, individuals require highly specialized, ongoing medical care. CCHS is a currently an incurable condition with no available drug therapy. But with your help, that could change!

What is the CCHS Network?

The CCHS Network is the leading nonprofit organization dedicated to serving individuals and families affected by CCHS. By advancing research, educating healthcare professionals, advocating for better recognition and expert care, and connecting families around the world, the Network is transforming uncertainty into hope. Strengthened by community and inspired by medical breakthroughs, it champions a future where CCHS is no longer a life-threatening diagnosis.

How will my gift make a difference?

Your generosity has the power to change lives by:

Providing comfort, support, and guidance to parents hearing the diagnosis for the first time
Funding innovative research that accelerates discoveries and advances future treatments
Educating healthcare professionals to improve the recognition, diagnosis, and lifelong care of individuals with CCHS
Bringing families together through conferences, webinars, and online support
Empowering adolescents and adults with CCHS to build lives of independence, purpose, and possibility
Delivering life-sustaining medical equipment to families facing financial hardship
Supporting the CCHS patient registry in partnership with the National Organization for Rare Disorders (NORD), helping drive research and improve understanding of the disease
Strengthening the CCHS Network's infrastructure to ensure the stability, growth, and long-term impact of its mission

Thank you for casting a light on CCHS!

For more information on CCHS, go to www.CCHSnetwork.org.

Wermeling Family Campaign

Wermeling Family Campaign: Help us light the way!