American Syringomyelia Alliance Project, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

ASAP

Branch/Affiliation:

National Organization

Year Established:

1988

Type of organization:

Condition(s)-specific organization

Mission Statement:

To improve the lives of people affected by syringomyelia, Chiari malformation and other related conditions, while we find cures.

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

Organizational Contact Information

Title:

Chief Executive Officer

First Name:

Michael

Last Name:

Scarpone

Address:

PO Box 1586

Longview, Texas, 75606-1586

Fax:

+1 903 757 7456

Toll Free Number:

+1 800 272 7282

Email:

info@asap.org

ListServe:

LISTSERV@lists.maine.edu

Website Address:

http://www.asap.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Information provided for:

Affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

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

Grief counseling

Non-medical services

Political action

Advocacy

Training

Speakers

Pen pal program

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Slides

Research updates

Video(s)/Movie(s)

Audiotape(s)

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Financial assistance for:

Assistive devices

Scholarships