Disease, Disorders, Medical Disciplines

Cardio Facio Cutaneous International Inc

  • Vestal, NY
  • www.cfcsyndrome.org

Mission Statement

Strive to help each other cope with the challenges of raising a child with a rare and often medically involved disorder. 

Act as a clearinghouse of information on all aspects of Cardio-Facio-Cutaneous Syndrome. 

 Publish newsletters, CFC Parents' Guide and host a website. 

Educate the general public, medical professionals, and government agencies by disseminating information on CFC Syndrome. 

Facilitate research on this very rare syndrome.

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Service Areas

Self-reported

International

We serve and provide outreach to all families with CFC children who contact us.

ruling year

1999

Principal Officer

Self-reported

Brenda Conger

Co Principal Officer

Self-reported

Mrs. Brenda Conger

Keywords

Self-reported

Cardio-Facio-Cutaneous Syndrome

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Also Known As

CFC International

EIN

16-1569293

 Number

1200707337

Contact

Cause Area (NTEE Code)

Heart and Circulatory System (G43)

Pediatrics (G98)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

We maintain the most extensive registry for CFC Syndrome
patients in the world. The Registry provides resources for the study of CFC
Syndrome. It maintains centralized information records on CFC Syndrome cases
from around the world.  The Registry also serves to improve communication
of ideas among interested researchers, and to assure rapid distribution of any
new information that may benefit patients or their families. As part of this
medical registry we were founding members of the Genetic Alliance BioBank. The
BioBank contains the largest collection of DNA samples from CFC patients
and their parents. This parent driven repository was instrumental in the gene
discoveries in 2005. 

 Our next phase of advocacy research has been our recent membership in the National Disease Research Interchange (NDRI) where tissue donation can take place. CFC International can play a critical role in connecting researchers to patient tissue for possible treatments.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Patient Registry: CFC Syndrome is a very rare condition. To better understand the nature and natural course of the syndrome, an International Registry has been established. The Registry provides resources for the study of CFC Syndrome. It maintains centralized information records on CFC Syndrome children cases from around the world. Confidentiality of personal information regarding incidence, genetics, clinical course, and prognosis is provided to professionals and families. The Registry also serves to improve communication of ideas among interested researchers, and to assure rapid distribution of any new information that may benefit patients or their families. Supporting Research Efforts: CFC BioBank CFC International holds the world's largest collection of blood and tissue from people affected by CFC and their immediate relatives. It is the only centralized repository in the world. We are using these samples to promote research to locate the gene(s) responsible for causing CFC Syndrome. CFC International joined the Genetic Alliance BioBank in 2004 to make certain that your privacy and confidentiality are protected and your samples are available to any approved research project. The creation of this bank will serve as a resource for researchers around the world who are willing to search to find the gene(s) responsible for the Cardio-Facio-Cutaneous Syndrome. Family Conference with Clinical Evaluations: Every two years CFC International brings physicians, clinical and scientific researchers and families together. Clinics are offered at no cost to affected children. Families hear about research advancements directly from the researchers. Resource materials are provided for affected families to better assist them in caring for a person with this rare disorder.

Category

Population(s) Served

Budget

Service Areas

Self-reported

International

We serve and provide outreach to all families with CFC children who contact us.

photos


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Financials

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Operations

The people, governance practices, and partners that make the organization tick.

Cardio Facio Cutaneous International Inc

Leadership

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Principal Officer

Brenda Conger

Co Principal Officer

Mrs. Brenda Conger

BIO

Brenda Conger incorporated the CFC Family Network back in
1999 after three years of endless trips out of state with her husband and child
to find out what rare syndrome their son was born with. In 2003 the organization revised their
name to reflect their outreach to all areas of the world. Today, CFC
International has grown from the original listing of 21 USA cases to now close
to 150 International families. Under Brenda’s leadership the group has established their own BioBank of
DNA and clinical data. Brenda has established publication of a quarterly
newsletter, produced a syndrome brochure, Parent’s Guide, web site, computer
list serve, and hosted 5 International Conferences and clinic programs. The organization has organized a
prestigious medical advisory team. Through Brenda’s efforts CFC International became a founding member of
the Genetic Alliance BioBank. Brenda is extremely appreciative to all the CFC families who
have supported her efforts to make CFC Syndrome a higher profile condition in
the medical community. Brenda
lives in Vestal, NY with her husband Cliff, 21-year-old daughter Paige, and 17-year-old son Clifford. She has a master’s degree in special
education. She has been employed by the Binghamton, NY School District as a
special education teacher for the past 32 years and currently is Coordinator of
Work-Study, Transition Services, and the School Based Intervention Team.

STATEMENT FROM THE Principal Officer

"CFC syndrome is a rare genetic condition that typically
affects the heart (cardio-), facial features (facio-) and skin
(cutaneous). It is seen with equal
frequency in males and females and across all ethnic groups. Children with CFC syndrome may
have certain features that suggest the diagnosis, such as relatively large head
size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or
scaly skin, and small stature.  
Most will also have a heart defect. While there is a wide spectrum of severity in CFC syndrome,
most individuals will have some degree of learning difficulty and developmental
delay.   There are several
characteristic facial features that are evident in CFC syndrome that may
overlap with other conditions, particularly Noonan Syndrome (NS) and Costello
Syndrome (CS). Therefore, accurate
diagnosis is essential for proper medical management."

Governance

BOARD CHAIR

Brenda Conger

CFC International

BOARD LEADERSHIP PRACTICES

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BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


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CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


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ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


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BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?