Grant Request CCHS Network
Hermanowski Family Foundation Initial Request Form
Organization Name: CCHS Network
Legal Name (if Different):
Also Known As:
Mailing Address: 99 Wall St # 4814
City: New York City
State: NY
Postal Code: 10005
Main Phone: 414-379-6480
Main Fax:
Organization Website: www.cchsnetwork.org
Employer ID Number: 22-3634814.
Organization Tax Status: 501(c)3
Proposal Information
Today’s Date: 3/18/2026
Requested Amount: 10,000
Project Title: Rapid Response for new Families
Project Description:
Congenital Central Hypoventilation Syndrome (CCHS) is a rare, life-threatening genetic disorder affecting the autonomic nervous system, causing children to lose automatic control of breathing, particularly during sleep. With an estimated incidence of 1 in 200,000 births and fewer than 1,500 known cases worldwide, CCHS is so rare that most physicians will never encounter it in their careers. Yet the consequences of mismanagement are severe: respiratory failure, cardiac arrest, and death.
The most urgent barrier facing CCHS families today is not the absence of treatment options. It is the inability to find a physician who has ever seen another patient. Families spend months or years navigating a fragmented medical system, often relying on local pulmonologists or neurologists with no CCHS experience, while a small cluster of knowledgeable specialists exists at a handful of academic medical centers with no roadmap to reach them. Families in states like Florida, where CCHS cases are documented but expertise is sparse, face this crisis acutely.
CCHS Network requests $10,000 to design, build, and publicly launch the first-ever CCHS Specialist Network Map: an interactive, searchable online tool that allows families of children diagnosed with CCHS to identify physicians with documented CCHS experience by state, specialty, and telehealth availability. The project will include a structured outreach survey to the national CCHS clinical community, a web-based mapping tool embedded in the CCHS Network patient portal, and a plain-language family navigation guide to help newly diagnosed families use the resource and initiate specialist consultations.
This tool will be built once and serve families in perpetuity. For a child whose life depends on proper ventilator management and expert longitudinal care, knowing where to find a physician who understands their condition is not a convenience. It is a lifeline.
Total Project Budget: 13,000
Other Funding
Sources For The Project (Committed & Potential): Reserves
Project Duration: 8 Months
Geographical Area Served: United States
Age Group To Be Served: Birth – 21
Contact Information
Contact Prefix (Mr,Mrs etc.): Mr.
Contact First Name: Phillip
Contact Last Name: Mason
Contact Title: Executive Director
Contact Phone:
Contact Email: phillipmason@cchsnetwork.org