The Myelin Project

General Organizational Information

Organization Name:

The Myelin Project

Branch/Affiliation:

International headquarters

Year Established:

1989

Type of organization:

Research institute or organization

Mission Statement:

Our mission is to end the human suffering caused by genetic demyelinating diseases.

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:

Leukodystrophy

Organizational Contact Information

Title:

Executive Director

First Name:

Candace

Last Name:

Root

Address:

1400 Wallace Blvd. Suite 258

Amarillo, 79106

Phone:

+1 806 356 4693

Fax:

+1 806 356 4694

Toll Free Number:

+1 800 869 3546

Email:

candace.root@myelin.org

Website Address:

http://www.myelin.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Portuguese

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Range of services include:

Referrals to research studies

Medical referrals

Advocacy

Telephone helpline

E-mail list

Air transportation

Educational materials include:

Pamphlet(s)

Website

Newsletter

Research updates

Resource guide

Student materials

Conferences/workshops for:

Researchers

Professionals