This Saturday, September 27th, we join the global community in recognizing International CCHS Day, a day dedicated to raising awareness for Congenital Central Hypoventilation Syndrome (CCHS), celebrating the resilience of those affected, and advancing support for families navigating this rare condition.
At Avery Biomedical Devices, we are proud to stand alongside the CCHS Network and thousands of families worldwide in casting a light on CCHS. For over four decades we have been committed to helping those with breathing difficulties and improving their quality of life, including a special focus on those with CCHS.
What Is CCHS?
CCHS, also known as Ondine’s Syndrome, is a rare disorder of the autonomic nervous system that disrupts the body’s ability to regulate breathing, especially during sleep. It stems from mutations in the PHOX2B gene and can present at birth or later in life as late-onset CCHS (LO-CCHS). Without intervention, individuals with CCHS may experience dangerously low oxygen levels and elevated carbon dioxide, which can be fatal.
Many patients rely on mechanical ventilation to survive, but traditional methods such as tracheostomy or bi-level positive airway pressure can be invasive and limiting. That’s where Avery’s diaphragm pacing system offers a transformative solution.
A Breath of Innovation
Avery’s diaphragm pacemaker stimulates the phrenic nerve, enabling more natural breathing by harnessing the body’s own diaphragm. It’s a minimally invasive option that can improve mobility, speech, and quality of life for individuals with CCHS and other conditions affecting respiratory function.
We’ve seen firsthand how diaphragm pacing can restore independence and dignity to patients who once relied on bulky, restrictive ventilators. For families living with CCHS, this technology is more than a device, it’s a lifeline.
Cash was diagnosed with CCHS and implanted with the Avery Diaphragm Pacemaker at age 5, and has been pacing ever since. See Cash’s story.
Why CCHS Day Matters
International CCHS Day is more than a date on the calendar. It’s a rallying cry for awareness, research, and compassion. The CCHS Network has been instrumental in building community, funding research, and advocating for better care. This year’s theme, “Cast a Light on CCHS,” reminds us of the power of visibility – because rare doesn’t mean invisible.
From social media campaigns to fundraising initiatives, the CCHS Network is mobilizing support across the globe. Every t-shirt sold, every pin worn, and every donation made helps fuel research, education, and direct assistance to families in need.
How You Can Help
If you or someone you love is affected by CCHS—or if you’re seeking alternatives to traditional ventilation—Avery Biomedical Devices is here to help. We encourage you to:
- Learn more about diaphragm pacing and whether it’s right for you or your loved one. Learn more about Avery and CCHS
- Connect with a recommended physician to explore treatment options. If you need information on a doctor in your area familiar with diaphragm pacing, please contact us.
- Reach out to our team for personalized guidance and support: Call us at 631.864.1600 or contact us through our online form.
And on this CCHS Day, we invite everyone to support the incredible work of the CCHS Network:
- Make a donation to accelerate research and support families. You can donate here if you are so inclined.
- Join the awareness campaign by sharing social media frames, posts, and stories. CCHS Day 2025 Resources
- Enter the sweepstakes for a chance to meet actress and advocate Leighton Meester, who’s helping cast a light on CCHS. Sweepstakes Info
A Shared Breath of Hope
At Avery, we believe that every breath matters. On CCHS Day 2025, we honor the courage of those living with CCHS, the dedication of their families, and the tireless efforts of advocates and researchers. Together, we can illuminate the path forward—toward better care, greater awareness, and a future where every individual with CCHS breathes easier.
Let’s cast a light. Let’s make a difference.
