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CCHS Network Inc
New York, NY · EIN 223634814 · Form 990 · FY2025 · NTEE G120 · Voluntary Health Associations · Small ($100K-$1M) · cchsnetwork.org
revenue
$349K
expenses
$295K
net assets
$1.5M
employees
0
volunteers
14
program ratio
51%
mission · from form 990

The CCHS family network's mission is to promote communication across physician/patient communities in the United States and around the world. The aim of the organization is to inform families about resources and research without prejudice or predisposition toward any particular provider, technology, treatment strategy, research team or medical practitioner. They have a multi-focused mission of education and support for our families and CCHS patients, inter-family and family-physician communication, and supporting and facilitating CCHS research.

profile · synthesized from sources

CCHS Network Inc is a voluntary health association dedicated to supporting patients and families affected by Congenital Central Hypoventilation Syndrome (CCHS), a rare neurological disorder. The organization promotes education, research, and communication among patients, families, and medical professionals globally. It provides resources on clinical care, transitions across the lifespan, and connects families with a network of specialized physicians.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $82K
    In 2024 the organization hosted the International CCHS Day online, the CCHS Network Family Conference and attended the Oxford Breathe Research Conference
named programs · 4 · from sources

What they call their work

CCHS Network Family Conference
Gathering for families and medical professionals to share updates, resources, and support
CCHS Research Support
Facilitates and promotes research by connecting scientists and clinicians at international conferences
International CCHS Day
Annual online event to raise awareness and connect the global CCHS community
Physician Referral Network
Directory of medical specialists worldwide with expertise in diagnosing and managing CCHS
activities · 8 groups

What they do

  • Rare Genetic Disease Research and Advocacy 2 activities
    • Conducting and supporting CCHS research
      Supports research on CCHS including the identification of the PHOX2B gene mutation as the cause, development of a mouse model for genetic study, and estimating global prevalence of CCHS cases.
    • Supporting access to genetic testing and laboratory resources
      Maintains and provides a list of approved laboratories for PHOX2B genetic testing, supports the availability of genetic testing for CCHS since 2003, and provides information about genetic testing centers.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Connecting CCHS patients and families to peer support networks
      Connects individuals and families affected by Congenital Central Hypoventilation Syndrome (CCHS) to a support network of others with lived experience, facilitating emotional and practical support.
  • Patient and Family Support Services 1 activity
    • Facilitating communication between families and medical professionals
      Facilitates communication between CCHS patients, families, and physicians to improve care coordination and support informed decision-making.
  • Pediatric Medical Care and Research Support 1 activity
    • Funding CCHS treatment development through book sales
      Directs all proceeds from the sale of a CCHS awareness children's book to support the development of new treatments for CCHS.
  • Patient and Researcher Conferences 1 activity
    • Organizing family and science conferences and awareness events
      Hosts and organizes annual events including the CCHS Family Conference, International CCHS Day, and the International Science Conference, both in-person and virtually, to support education, community building, and scientific exchange.
  • Comprehensive Cancer Care and Survivorship 1 activity
    • Providing clinical care guidance for CCHS patients
      Recommends and provides guidance on routine medical monitoring and interventions including annual sleep studies, cardiac monitoring via Holter or echocardiogram, bronchoscopy for tracheostomy patients, gastroenterology evaluation for constipation, ophthalmologic testing, and tumor screening for patients with specific mutations.
  • Financial Aid and Scholarship Access Programs 1 activity
    • Providing financial assistance for conference participation
      Offers scholarships covering hotel stays, meals, and travel costs up to $400 for families facing financial challenges to attend the CCHS Family Conference.
  • Uncategorized 2 activities
    • Advocating for clinical screening and monitoring standards
      Recommends lifelong screening for neural crest tumors in CCHS patients with specific PHOX2B mutations and promotes standardized monitoring protocols to prevent complications.
    • Providing education on CCHS physiology and respiratory management
      Provides educational resources explaining the neurological basis of CCHS, automatic breathing mechanisms, gas exchange in the lungs, and the role of exhalation in removing carbon dioxide, along with guidance on home ventilation, oxygen/CO2 monitoring, and emergency power preparedness.
financials · form 990 · fy2025
revenue
Total revenue$349K
Contributions & grants$315K90%
Program service revenue$00%
Investment income$35K10%
Other revenue$0
expenses
Total expenses$295K
Program expenses51%
Admin / overhead49%
Fundraising0%
Salaries & benefits$0
Grants paid out$133K
Largest expense lineProfessional Fees
balance sheet
Total assets$1.45M
Cash$596K
Investments$855K
Liabilities$0
Net assets$1.45M
Liquid reserves58.9 mo
6 years on record · 2020–2025 · YoY revenue -2.2%
leadership · form 990 part vii · fy2025

Who runs it

board members · 9
  • ADAM SETH FOX — Director
  • Anna Culbertson — Director
  • DESIREE COUGLE — Treasurer
  • Ian Hatfield — Director
  • Linda Dokas — Director
  • MARNE HARVICH — Director
  • MELINDA RICCITELLI PHD — President
  • Maddie Schueler — Director
  • REBECCA MARTINE MSN — Vice President
relationships · 14

Who they work with

  • 23andMe Partner — Collaborates with independent genetic testing companies like 23andMe to confirm PHOX2B mutations when specifically requested.
  • Ambry Genetics Partner — Genetic testing provider offering CCHS-related testing services.
  • American Thoracic Society Coalition — Collaborates on clinical guidance as reflected in the 2010 ATS Statement on CCHS management.
  • Blueprint Genetics Partner — Genetic testing provider offering CCHS-related testing services in the U.S. and Finland.
  • CCHS Network Network — Largest global network of patients and families affected by Congenital Central Hypoventilation Syndrome.
  • CGC Genetics Partner — Genetic testing provider offering CCHS-related testing services in Portugal.
  • EUChS Partner — Provider of an informational booklet on CCHS available in multiple languages.
  • Fulgent Diagnostics Partner — Genetic testing provider offering CCHS-related testing services.
  • Genetics Center Partner — Genetic testing provider offering CCHS-related testing services.
  • Keep Me Breathing Partner — UK CCHS charity that produced the book in collaboration with CCHS Network Inc.
  • Medical Genetics, Hôpital Necker – Enfants Malades Partner — Genetic testing and clinical care provider for CCHS in France.
  • NIH Government — Referenced as a key informational resource for Congenital Central Hypoventilation Syndrome.
  • NORD Partner — Referenced as a key informational resource for Congenital Central Hypoventilation Syndrome.
  • Renaissance Newport Beach Hotel Partner — Host venue for the 2024 CCHS Family Conference, with room block and direct billing arrangements for scholarship recipients.
strategies · 5

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Autonomic Nervous System–Based Clinical Framework
    methodology: autonomic_nervous_system_dysfunction_model
    By understanding CCHS as a disorder of autonomic nervous system development due to defective brainstem signaling, the organization guides treatment and education because this model explains the full spectrum of involuntary dysfunctions beyond breathing, leading to more comprehensive care.
  • Genetic Diagnosis and Precision Medicine
    methodology: precision_medicine_approach
    By using genetic testing as the diagnostic gold standard and tailoring clinical management to PHOX2B mutation subtypes (PARM vs. NPARM), the organization improves diagnostic accuracy and treatment planning because genotype directly informs disease severity and physiological outcomes in CCHS.
  • Integrated Education and Communication Model
    methodology: physician-patient-community-communication
    By facilitating unbiased communication and education across patients, physicians, and researchers, the organization advances both clinical care and research because bridging these communities enables shared learning, reduces misinformation, and accelerates evidence generation.
  • Peer Support Network
    methodology: peer_support_network
    By connecting newly diagnosed families with experienced CCHS families, the organization fosters emotional resilience, reduces isolation, and improves care navigation because shared lived experience builds trust and practical understanding that clinical guidance alone cannot provide.
  • Proactive Clinical Monitoring and Early Intervention
    methodology: proactive_monitoring
    By emphasizing early diagnosis and routine clinical monitoring, the organization prevents life-threatening complications because timely detection of autonomic instability allows for earlier, more effective interventions that improve long-term outcomes.