Encinitas, CA, [Sept. 18,2015]— The CCHS Foundation proudly announces the first annual International CCHS Day on November 14, 2015.
The CCHS Foundation is the fundraising arm of the CCHS Network, a support and advocacy organization for families living with Congenital Central Hypoventilation Syndrome (CCHS). CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is nearly or totally absent. A CCHS patient’s respiratory responses are sluggish when awake and absent to varying degrees during sleep, serious illness, and/or stress. Treatment for this rare medical condition is limited to mechanical ventilation and there is no available medication to date. There are approximately 1200 individuals affected worldwide.
CCHS patients and their families across the world will celebrate CCHS Day by raising both awareness and funds for the advancement of research and future treatments. Planned fundraising events include a social media campaign named the “No-Show Pajama Party”, a video game marathon, Dine and Donate events across the United States, as well as numerous international happenings.
Carissa Froyum, a Cedar Valley mother of a four-year-old with CCHS, will be discussing what it’s like to raise a child with this rare, life-threatening condition Thursday evening at 7 pm in McCollum 137 on UNI’s campus. Dance Marathon and the Sociology Club are hosting the discussion as well as a screening of “Our Curse,” an academy-award nominated documentary short following a family’s first months home caring for a baby with CCHS.
You can follow the CCHS Foundation on Facebook @ https://www.facebook.com/ TheCCHSFoundation and Twitter @CCHSNetwork. Additionally, the Academy Award nominated documentary on CCHS, Our Curse, can be viewed on the New York Times webpage.
“The CCHS Family Network was started in 1989” reports Melinda Riccitelli, CCHS Foundation Co-Chair. “Up until then, CCHS was so rare that not a single organization or support group existed to ease the burden of this complicated disease Twenty-six years later, we continue the work of advocating for CCHS patients and families. It is thrilling to announce our first International CCHS Day. We hope this day brings greater awareness, harnesses resources and leads to be better treatment options for our orphan disease.”
The CCHS Network, Inc. is a registered 501(c)(3) non-profit organization.