Avery Biomedical Devices, Inc.

09/25/2025

09/25/2025

Congenital Central Hypoventilation Syndrome (CCHS) is a rare and life-threatening condition that affects how the body controls breathing

09/23/2025

International CCHS Day is THIS SATURDAY!!!!!!!!!!!!!!!!!!!!!

Join us in spreading awareness about CCHS by casting a light on the brave individuals and families who inspire us every single day.

Together, we can ignite change.

09/22/2025

Did you know that in 2016, the CCHS Network was chosen, after a competitive selection process, to partner with the National Organization of Rare Disorders (NORD)?

The partnership includes the development of a Natural History Study of CCHS: CCHS Network One World Registry (CCHS NOW Registry). The CCHS NOW Registry is a longitudinal study that aims to fill research gaps to help medical researchers better understand the progression of CCHS over time and to support drug development programs.

If you are interested in helping us continue to fund groundbreaking research, consider donating today! You can donate here: https://cchsnetwork.org/donate/

09/18/2025

09/18/2025

We are thrilled to announce that we will be teaming up with actress and advocate Leighton Meester to cast a light on Congenital Central Hypoventilation Syndrome (CCHS)! In honor of CCHS Day, we’re holding a sweepstakes on the RallyUp platform, where one lucky supporter will have the opportunity to enjoy a virtual coffee date with Leighton!

Every $5 donation enters you for a chance to win a private, 30 minute chat with Leighton. The more you give, the more chances you have to win. The sweepstakes opens next Saturday, September 20th. Stay tuned for more details on how to enter!

Please help us spread the word about this exciting campaign — every sweepstakes ticket brings us closer to our first drug or even a cure!

 

09/11/2025

On this 24th anniversary of September 11, we solemnly honor the precious lives lost and pay tribute to the courageous firefighters, police officers, and first responders who gave everything to save others. We hold the victims and their families in our hearts.

FDNY Foundation

09/10/2025

Thank you DSP's!

Happy Direct Support Professionals Week! 
 
Thank you to the staff members who support individuals with intellectual, developmental, and physical disabilities. Direct support professionals (DSPs) are vital to the life experience of our community members, helping ensure they’re able to live their lives to the fullest. 
 
Thanks for all you do, DSPs!

09/09/2025

We are 20 days away from CCHS Day!

09/08/2025

Are you looking for a support group for CCHS? We will be hosting adult support groups on the second Sunday of every month. Join us on Sunday, September 14, at 5:00 pm EST for our Adult Zoom Support Group. This group is intended for individuals 18 years or older who wish to discuss CCHS with others. Our amazing board member, Anna Culbertson, will be moderating this session. She is a CCHS patient who was diagnosed in adulthood (26 years old) and has a scientific background. We hope to see many of you there!

Register here by September 12:https://forms.gle/3sSTckZMaLo5b8n67

09/05/2025

WORLD SCI DAY!
Sept. 5, Spinal Cord Injury Day (SCI Day

WORLD SCI DAY!

Sept. 5, Spinal Cord Injury Day (SCI Day) is a powerful reminder of the challenges faced by individuals living with spinal cord injury and an opportunity to emphasize our commitment to prevention. The International Spinal Cord Association (ISCoS) began observing World SCI Day in 2016. This year's theme is:
Fall Prevention, Spinal Cord Protection. The International Spinal Cord Association (ISCoS) began observing World SCI Day in 2016.

09/05/2025

27 September 2025: International Congenital Central Hypoventilation Syndrome Day (Ondine Syndrome - C.C.H.S.).

27 settembre 2025: Giornata Internazionale per la Sindrome da Ipoventilazione Centrale Congenita (Sindrome di Ondine - C.C.H.S.).