Chiari & Syringomyelia Foundation

General Organizational Information

Organization Name:

Organization Acronym:

CSF, Inc

Year Established:

2007

Brochure:

7-30-2009 CSF Brochure 2.pdf

Type of organization:

National organization

Mission Statement:

Our mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Arnold Chiari Malformation

Chiari Malformation Type 2

Chiari Malformation Type 3

Chiari Malformation Type 4

Syringomyelia

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

Degree:

First Name:

Dorothy

Middle Initial:

Last Name:

Poppe

Address:

29 Crest Loop

Staten Island, NY, 10312

Phone:

+1 718 966 2593

Fax:

+1 718 966 2593

Email:

dpoppe@CSFinfo.org

Website Address:

http://www.CSFinfo.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Medical referrals

Genetic testing

Genetic counseling

Genetic information

Rehabilitation resource referrals

Referrals for non-medical services

Non-medical services

Advocacy

Speakers

Telephone helpline

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Research updates

Video(s)/Movie(s)

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals