INTERNATIONAL CCHS Day is a reminder that we are not alone.

When my daughter Roni was born, there were no cell phones, computers, or internet, but there was a fantastic, dedicated medical team at Soroka Hospital in Be'er-Sheva, Israel. A lot has happened since, especially in technology, so communication and information sharing are very helpful, but so far there is no cure for this life-threatening condition. Our loved ones have to deal with challenges every day and every night, but you, our family and friends, are a great support, so we are asking you again to cast a light on this little-known and rare disorder, increase awareness among others, and increase the chance that research will come up with a cure by sending your donation to CCHS Network.

This September 26 is International CCHS Day.

With Love,

Tamar and Roni.

For the last few years, I’ve been involved in fundraising to work toward a cure for Central Congenital Hypoventilation Syndrome (CCHS), the rare breathing condition that affects my adult daughter Roni. Every year we hope continued research will lead to solutions for CCHS. When my daughter Roni was born, we were told she would need a ventilator to ensure adequate breathing only while she sleeps. Now, as an adult, she needs the vent to support her breathing 24/7.

Your generous support is greatly appreciated! Take a look below to see how donations are used.

You may donate above or send a check to:

CCHS Foundation

PO Box 230087

Encinitas, CA 92023-0087

When you donate, please specify that it’s in honor of Roni Drucker, so our name will be included for the prize drawing. As before, I will give away a beautiful quilt or other artwork I made. (Please let me know by email that you have donated)

This year, CCHS International Day is September 27, 2026

Thank you so much,

Tamar Drucker

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.

The Drucker Family CCHS Day Campaign

Help us light the way!