Sponsors

We love our Corporate Partners! We are always happy to welcome new partner organizations that support our mission. Their support brings hope to the families living with CCHS.


About the CCHS Foundation

The CCHS Foundation is a subsidiary of the CCHS Family Network. The CCHS Family Network is a non-profit tax-exempt organization registered in the United States. Their mission is to educate and support CCHS families and patients, foster inter-family and family-physician communication, and to support and facilitate CCHS research.


CCHS Foundation Announces Partnership With BAYADA Home Health Care

Encinitas, CA, August 9, 2017 – The CCHS Foundation and BAYADA Home Health Care are proud to announce a partnership that will see BAYADA contribute significant financial support to the rare disease organization.

BAYADA Home Health Care recently signed on as a CCHS Foundation Corporate Sponsor and made a generous donation of $25,000.00. People living with Congenital Central Hypoventilation Syndrome (CCHS) require ventilatory support, which typically demands home health services. BAYADA employs over 22,000 home health professionals who believe that clients and families deserve care delivered with compassion, excellence, and reliability.

“Families face many harsh realities after receiving the diagnosis of CCHS, including the need for nurses in the home up to 24 hours a day”, said Rebecca Martine, Co-Chair of the CCHS Foundation. “BAYADA has provided exceptional care for my son, Luke (5), since the day he came home from the hospital. They will now support CCHS families around the world by championing our bigger mission of finding a cure. Organizations like BAYADA can help our community move the necessary mountains to realize a better future for all those affected by CCHS.”

“We are thrilled and honored to partner with the CCHS Foundation to support individuals and their families who live with the challenge of this disease every day,” said BAYADA President, Mark Baiada. “Supporting organizations like the CCHS Foundation aligns with our mission of helping people have a safe home life with comfort, independence, and dignity. It is our hope that through this partnership, the CCHS Foundation will be able to fund research into new treatments and eventually, a cure.”

For more information about CCHS, please visit cchsnetwork.org.


About BAYADA Home Health Care

BAYADA Home Health Care is a trusted leader in providing clinical care and support services at home for children and adults of all ages. Since 1975, company founder Mark Baiada has been at the forefront of the home health care movement, working to give people greater access to high-quality care that helps them live safely at home.


CCHS Foundation Announces Multi-Year Partnership With Avery Biomedical

averyEncinitas, CA, April 18 2017 – The CCHS Foundation and Avery Biomedical are proud to announce a multi-year partnership that will see Avery contribute significant financial support to the rare disease organization.

The partnership begins in earnest with a $25,000 donation from Avery split into monthly gifts of $2,500 from March to December. People living with congenital central hypoventilation syndrome (CCHS) require ventilatory support, such as the diaphragm pacemakers manufactured by Avery. The Avery Breathing Pacemaker is an FDA approved implanted phrenic nerve or diaphragm stimulator. There are about 1200 people living with CCHS worldwide. Currently 217 CCHS patients utilize the Avery Breathing system for ventilatory support.

“We are delighted to formalize our partnership with Avery Biomedical”, Melinda Riccitelli, Ph.D., Co-Chair of the CCHS Foundation said. “Avery has been a steadfast friend to the CCHS community for many years so it is fitting that they are now the premier corporate sponsor of the CCHS Foundation. The CCHS Foundation is committed to improving the lives of those living with CCHS; Avery’s pledge will help us realize our goals. Their contributions will be used to fund annual CCHS research grants, expand international outreach and education, and support individuals and families living with CCHS.

“We are pleased and honored to offer our continual support to the important work of the CCHS Foundation,” said Linda Towler, CEO of Avery Biomedical Devises.

For more information about CCHS, please visit cchsnetwork.org.


About Avery Biomedical

Avery Biomedical Devices, Inc. has been commercially distributing breathing pacemakers since 1971. It is the only diaphragm pacing system to have full premarket approval (PMA) from the US FDA and CE marking privileges under the European Active Implantable Medical Device Directive for adult and pediatric use. In addition to serving patients with CCHS, the Avery device helps people living with quadriplegia and other forms of diaphragm paralysis.


Media Contact

Melinda Riccitelli, Ph. D.
mycchsfoundation@gmail.com
(760) 633-3141
cchsnetwork.org