What does International CCHS Day mean to our family?

Before December 11, 2025 CCHS did not hold weight or emotion in our lives, but after that date, it has meant more than words can communicate.

CCHS is a rare genetic, autonomic system disease that affects approximately 4,000-5,000 people worldwide, with our Mason being 1 of them. CCHS day is a day for us to remember not only how far our baby has come, how bright and hopeful his future is, but to thank all of the people in the CCHS community for shining a light of hope during one of the darkest times in our lives.

As many of you know, Mason was diagnosed with CCHS at 2 months old. What some may not know about the day of diagnosis, was that we were presented with one treatment option, which for our state of Michigan, is a tracheostomy. Currently, this is the most studied treatment option, but some CCHS specialists are researching alternative treatment options for this condition, such as trialing mask ventilation starting in infancy.

With this diagnosis came fear for his future, and intense advocating for his treatment options that lasted over a month. During this time, we were blessed to have been introduced to the CCHS Network community, with multiple physicians, and advocates who walked (virtually) by our side and advocated for our baby, no matter what we decided, just as strongly as we did. Our son’s light has never been dulled, and he is the happiest baby we’ve ever met.

International CCHS day used to just be any ordinary day, but now, it is a way for families like ours and researchers to help share awareness, research alternative treatment options, and the CCHS community to continue to grow and continue to support other families and people with CCHS.

For International CCHS day, September 26, 2026 it would mean the world to us to have your support, either by simply spreading the word and information about CCHS, or if you are willing/able to donate to the CCHS community, all proceeds go to the CCHS community to help families like ours.

We appreciate each and every one of you.

Love,
Mason & his family

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.

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