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CARDIO-FACIO-CUTANEOUS INTERNATIONAL
Peoria, AZ · EIN 161569293 · Form 990 · FY2020 · NTEE B99 · Education · Small ($100K-$1M) · www.cfcsyndrome.org
revenue
$146K
expenses
$150K
net assets
$603K
employees
3
volunteers
15
program ratio
31%
mission · from form 990

TO IMPROVE THE QUALITY OF LIFE THROUGH FAMILY SUPPORT, RESEARCH, AND EDUCATION.

profile · synthesized from sources

Nonprofit organization supporting individuals and families affected by Cardio-Facio-Cutaneous (CFC) syndrome, a rare genetic disorder. Provides family support, funds research, and promotes clinical advancements through a global patient registry and medical advisory board. Focuses on improving diagnosis, care guidelines, and quality of life for those living with CFC syndrome.

named programs · 7 · from sources

what they call their work

Family Ambassador Program
Network of 51 parent volunteers providing peer support, outreach, and guidance to newly diagnosed families worldwide
Family Medical Conference
Bi-annual event bringing together families, medical experts, and researchers for education, networking, and clinical consultations; offered in hybrid format since 2022
Lillian’s Legacy Research Fund
Dedicated funding initiative supporting research into seizures, neurodevelopmental disorders, and other complications associated with CFC syndrome
New Family Orientation
Program launched in 2023 to help newly diagnosed families navigate resources, understand diagnosis, and access organizational support
Seizure Natural History Study
Funded research at the University of Minnesota to understand seizure prevalence and neurobehavioral outcomes in CFC syndrome, supported by the Lillian’s Legacy Research Fund
Virtual Support Sessions and Webinars
Online support groups and educational clinics hosted via Zoom in partnership with institutions like Cincinnati Children’s Hospital Rasopathy Clinic
Worldwide Patient Registry
Launched in 2016 with Invitae (formerly Patient Crossroads), this registry collects clinical data and DNA to support research and track the global CFC population
activities · 5 groups

what they do

  • CFC Syndrome Research & Registry 16 activities
    • Create and share tools for global community mapping and connection
      Developed an interactive world map showing general locations of families affected by CFC syndrome, based on data collected through the organization's 'connect with us' form, to foster community visibility and connection.
    • Develop and share data visualization tools for community mapping
      Created an interactive world map showing general locations of families affected by CFC syndrome, based on data from the organization's 'connect with us' form, to support community engagement and outreach.
    • Develop clinical management guidelines through expert consensus
      Funded the first Consensus Meeting in San Francisco, CA, to bring together medical experts and develop standardized management guidelines for CFC syndrome.
    • Develop syndrome management guidelines
      Funded a Consensus Meeting to develop syndrome management guidelines for CFC syndrome.
    • Develop syndrome management guidelines
      Funded a Consensus Meeting to develop syndrome management guidelines for CFC syndrome.
    • Fund and advance clinical research on CFC syndrome
      Directly funds research initiatives including a $30,000 grant to the University of Minnesota for the Seizure Natural History Study, a $30,000 grant to complete the final year of seizure research, its first official research grant on Growth Failure in CFC Syndrome, and has raised over $70,000 for seizure research over two years.
    • Fund and advance clinical research on CFC syndrome
      Directly funds research initiatives on CFC syndrome, including a $30,000 grant to the University of Minnesota for the Seizure Natural History Study, a $30,000 grant to complete the final year of seizure research, over $70,000 raised for seizure research over two years, and the first official research grant focused on Growth Failure in CFC Syndrome.
    • Fund research on CFC syndrome
      Funds research into various aspects of CFC syndrome, including growth failure and seizure natural history, having raised over $70,000 for seizure research and granted $60,000 to the University of Minnesota for seizure studies.
    • Fund research on CFC syndrome
      Funds research into various aspects of CFC syndrome, including growth failure and seizure natural history, having raised over $70,000 for seizure research and granted $60,000 to the University of Minnesota for seizure studies.
    • Funding CFC Syndrome Research
      Funds research into CFC syndrome, including grants for seizure research (totaling over $130,000 to the University of Minnesota), a study on Growth Failure, and a Consensus Meeting to develop syndrome management guidelines.
    • Maintain a patient registry for CFC syndrome
      Maintains and expands a registry of individuals with CFC syndrome, including an interactive world map of affected families, in collaboration with Patient Crossroads (now Invitae).
    • Maintain a patient registry for CFC syndrome
      Maintains and expands a registry of individuals with CFC syndrome, including an interactive world map of affected families, in collaboration with Patient Crossroads (now Invitae).
    • Maintain and expand global patient registry for CFC syndrome
      Operates a worldwide patient registry for CFC syndrome in collaboration with Patient Crossroads (now Invitae), continuously expanding participation through outreach and registration via the organization's 'connect with us' form.
    • Maintaining a Patient Registry
      Maintains and expands a worldwide registry of individuals with Cardio-Facio-Cutaneous (CFC) syndrome in collaboration with Patient Crossroads (now Invitae), and uses this data to create an interactive world map showing general locations of affected families.
    • Operate and expand global patient registry for CFC syndrome
      Maintains and expands a worldwide patient registry for CFC syndrome in collaboration with Patient Crossroads (now Invitae), serving as a foundational resource for research and clinical guideline development.
    • Support development of clinical management guidelines
      Funded the first Consensus Meeting in San Francisco, CA, to develop standardized syndrome management guidelines for CFC, advancing clinical care frameworks.
  • Conference Attendance Scholarships 5 activities
    • Administer scholarship fund for conference access
      Operates a scholarship fund to assist families with financial need in attending the CFC conference, improving access to critical community and medical resources.
    • Providing Conference Support and Information
      Offers a scholarship fund to help families with financial need attend the CFC conference and provides information about upcoming medical conferences and rare disease events to the community.
    • Support attendance at CFC conferences
      Operates a scholarship fund to help families with financial need attend the CFC conference and engages volunteers to support conference activities.
    • Support attendance at CFC conferences
      Operates a scholarship fund to help families with financial need attend the CFC conference and engages volunteers to support conference activities.
    • Support family and community engagement through conferences and information sharing
      Provides information about upcoming medical conferences and rare disease events, supports volunteers in conference and administrative activities, and operates a scholarship fund to assist financially needy families in attending the CFC conference.
  • Bylaws and Governance Documentation 3 activities
    • Developing Organizational Governance Policies
      Adopts governance policies based on standards from the New York State Council of Non-profits and provides guidelines to ensure uniformity and compliance in policy-related activities.
    • Implement governance and policy compliance frameworks
      Adopts governance policies aligned with standards from the New York State Council of Non-profits and provides internal guidelines and action sequences to ensure uniformity and compliance in organizational policy activities.
    • Implement standardized governance and compliance policies
      Adopts governance policies aligned with standards from the New York State Council of Non-profits and provides internal guidelines to ensure uniformity and compliance in policy-related activities.
  • General Volunteer Support Services 2 activities
    • Engage volunteers in organizational operations
      Utilizes volunteers to support conference logistics and perform administrative duties, contributing to the organization’s operational capacity.
    • Engaging Volunteers
      Engages volunteers to assist with various activities, including conference support and administrative duties.
  • Uncategorized 3 activities
    • Inform the community about medical events
      Provides information about upcoming medical conferences and rare disease events to keep the community informed.
    • Inform the community about medical events
      Provides information about upcoming medical conferences and rare disease events to keep the community informed.
    • Provide community information on medical and rare disease events
      Shares information about upcoming medical conferences and rare disease events to keep the CFC-affected community informed and engaged.
financials · form 990 · fy2020
revenue
Total revenue$146K
Contributions & grants$133K92%
Program service revenue$00%
Investment income$2K2%
Other revenue$10K
expenses
Total expenses$150K
Program expenses31%
Admin / overhead69%
Fundraising0%
Salaries & benefits$93K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$603K
Cash$603K
Investments$0
Liabilities$0
Net assets$603K
Liquid reserves48.3 mo
1 years on record · 2020–2020
leadership · form 990 part vii · fy2020

who runs it

paid leadership · 3
NameTitleHours/wkCompensation
Tuesdi Dyer Executive Dir. 5 $79K
Libby Airhart Outgoing Secret 5 $7K
Beth McHale Executive Assis 5 $580
board members · 9
  • Betsy Rosenbaum — President
  • CJ Mortimer — Secretary
  • Cara Borian — Board Member
  • Glenda Hux — Board Member
  • Jeff Kohler — Treasurer
  • Judy Doyle — Board Member
  • Les Rogers — Board Member
  • Pilar Magoulas — Board Member
  • Richard Boyce — Board Member
relationships · 54

who they work with

  • American College of Medical Genetics and Genomics Partner — Pilar Magoulas serves on the Program Committee.
  • Ann & Robert H. Lurie Children’s Hospital of Chicago Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a RASopathy Program and CFC Overview.
  • Arnold and Smith Law PLLC Partner — Donor to the Kinley Klassic fund
  • Boston Children’s Hospital Partner — Dr. Amy Roberts is the Director of the Cardiovascular Genetics Research Program at this hospital and serves on the Medical Advisory Board.
  • Boston Children’s Hospital Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome.
  • Bricktown Parking Inc. Partner — Donor to the Kinley Klassic fund
  • Children’s Hospital of Wisconsin Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a Neurofibromatosis and RASopathy Center.
  • Children’s National Medical Center Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, including The Gilbert Family Neurofibromatosis Institute and Noonan Spectrum Disorders Clinic.
  • Cincinnati Children’s Hospital Medical Center Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a RASopathies Clinic.
  • Costello Kids Partner — Collaborates on the UK Costello/CFC Conference agenda and family programming.
  • Duke University Partner — Dr. Daniel Kenney-Jung is an Assistant Professor of Neurology at this university and serves on the Medical Advisory Board.
  • Emory University School of Medicine Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome.
  • Erasmus University Medical Center – Sophia Children’s Hospital Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a CFC and CS Clinic and an NF1 Clinic.
  • Frito-Lay Inc. Partner — Donor to the Kinley Klassic fund
  • Genetic Alliance Partner — Collaborated on biobanking efforts for CFC International.
  • Global Genes Partner — Member of the Leadership Council of Global Genes.
  • Graybeards, LTD Partner — Donor in honor of Nola Iacobelli
  • HBC Champions Foundation Partner — Donor to the Kinley Klassic fund
  • Harvard Medical School Partner — Dr. Amy Roberts is an Associate Professor of Pediatrics at this institution and serves on the Medical Advisory Board.
  • Icahn School of Medicine at Mount Sinai Partner — Dr. Bruce D. Gelb is a professor at this institution and serves on the Medical Advisory Board.
  • Independent Opportunities Inc. Partner — Donor to the Kinley Klassic fund
  • Institute of Human Genetics, University Hospital Magdeburg and Mitteldeutsches Kompetenznetzwerk Seltene Erkrankungen (MKSE) Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a Centre for RASopathies.
  • Manchester Centre for Genomic Medicine Partner — Dr. Emma Burkitt-Wright, a consultant clinical geneticist, is associated with this center and serves on the Medical Advisory Board.
  • Manchester Centre for Genomic Medicine Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a Clinical Genetics Service and Regional Genetics Laboratory.
  • Mayo Clinic Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a Neurofibromatosis and Related Disorders Clinic.
  • Medical Genetic Center, UNIFESP Partner — Dr. Maria Ines Kavamura is a researcher and dermatologist at this center and serves on the Medical Advisory Board.
  • Mighty Myles Superhero Network Partner — Donor at the $500 to $999 level
  • Mindich Child Health and Development Institute Partner — Dr. Bruce D. Gelb is the Director of this institute and serves on the Medical Advisory Board.
  • Mount Sinai Hospital Partner — Listed as a clinic providing services related to Cardio-Facio-Cutaneous syndrome, specifically a Cardiovascular Genetics Program.
  • NYU Langone Medical Center Partner — Dr. Joseph Levy is a Professor of Pediatrics and attending gastroenterologist at this medical center and serves on the Medical Advisory Board.
+ 24 more