National Ataxia Foundation

General Organizational Information

Organization Name:

Organization Acronym:

NAF

Year Established:

1957

Type of organization:

Condition(s)-specific organization

Mission Statement:

The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education, and research.

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Ataxia

Friedreich Ataxia (FA)

Olivopontocerebellar Atrophy (OPCA)

Spinocerebellar Ataxia

Spinocerebellar Ataxia Type 3 (SCA 3)

Organizational Contact Information

Prefix:

Ms.

Title:

Patient Services Director

First Name:

Susan

Middle Initial:

Last Name:

Hagen

Address:

2600 Fernbrook Lane Suite 119

Minneapolis, MN, 55447-4752

Phone:

+1 763 553 0020

Fax:

+1 763 553 0167

Email:

naf@ataxia.org

Website Address:

http://www.ataxia.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

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

Medical referrals

Clinical or treatment centers

Genetic information

Awareness Programs

Advocacy

Pen pal program

E-mail list

Chat room

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

Researchers

Professionals

Cohort Development:

Registry of affected individuals

Blood and Tissue Banking

Research Management:

Participant recruitment

Awarding research grants

Providing information about clinical trials

Major research interests of the organization:

All forms of hereditary and sporadic (ideopathic) ataxia