Privacy-Preserving Community Mapping

Operates a scholarship fund to assist families with financial need in attending the CFC conference, improving access to critical community and medical resources.

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.

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.

Funded the first Consensus Meeting in San Francisco, CA, to bring together medical experts and develop standardized management guidelines for CFC syndrome.

Funded a Consensus Meeting to develop syndrome management guidelines for CFC syndrome.

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.

Utilizes volunteers to support conference logistics and perform administrative duties, contributing to the organization’s operational capacity.

Engages volunteers to assist with various activities, including conference support and administrative duties.

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.

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.

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.

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.

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.

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.

Provides information about upcoming medical conferences and rare disease events to keep the community informed.

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).

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.

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.