Muscular Dystrophy Association

General Organizational Information

Organization Name:

Organization Acronym:

MDA

Year Established:

1950

Type of organization:

Condition(s)-specific National

Mission Statement:

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Amyotrophic Lateral Sclerosis (ALS)

Carnitine Deficiency

Carnitine Palmitoyltransferase Deficiency Type 1

Carnitine Palmitoyltransferase Deficiency Type 2

Charcot-Marie-Tooth Disease

Werdnig Hoffman Disease

Congenital Myopathy

Congenital Myotonic Dystrophy

Dermatomyositis

Duchenne Muscular Dystrophy

Friedreich Ataxia (FA)

Inclusion Body Myositis

McArdle Disease

MELAS

Mitochondrial Disorders

Muscular dystrophy

Myasthenia gravis

Myositis

Myotonic dystrophy

Oculopharyngeal muscular dystrophy

Peroneal Muscular Atrophy

Phosphofructokinase Deficiency

Polymyositis

Pompe Disease

SMA Type II

Spinal Muscular Atrophy (SMA)

Lambert-Eaton Syndrome

Organizational Contact Information

Title:

Director of Outreach Initiatives

First Name:

Scott

Last Name:

Wiebe

Address:

3300 East Sunrise Drive

Tucson, AZ, 85718-3208

Phone:

+1 520 529 2000

Fax:

+1 520 529 5454

Toll Free Number:

+1 800 572 1717

Email:

mda@mdausa.org

Website Address:

http://www.mdausa.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Parents only

Siblings only

Media

Students

Researchers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Rehabilitation resource referrals

Peer support

Grief counseling

Referrals for non-medical services

Financial referrals

Non-medical services

Genetic testing

Awareness programs

Financial/estate planning

Summer camp

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Pen pal program

Genetic counseling

Loan of medical devices/equipment

Training

Advocacy

Chat room

Educational materials include:

Fact sheet(s)

Magazine

Video(s)/Movie(s)

Slides

Journal articles on condition

Pamphlet(s)

Lending library

Booklet(s)

CD Roms

Research updates

Newsletter

Resource guide

Website

Student materials

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Financial assistance for:

Medical care

Transportation

Assistive devices