Myotonic Dystrophy Foundation

General Organizational Information

Organization Name:

Organization Acronym:

MDF

Year Established:

2006

Type of organization:

Condition(s)-specific organization

Mission Statement:

Myotonic Dystrophy Foundation's mission is to lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Myotonic dystrophy

Myotonic Dystrophy 3 (DM-3)

Organizational Contact Information

Prefix:

Mrs.

Title:

Executive Director and Board Member

Degree:

MBA

First Name:

Lisa

Middle Initial:

Last Name:

Harvey Vittek

Address:

10016 Foothills Blvd Suite 130

Roseville, CA, 95747-7198

United States

See map: Google Maps

Phone:

+1 916 788 2626

Fax:

+1 916 788 2646

Toll Free Number:

+1 866 968 6642

Email:

info@myotonic.org

Website Address:

http://www.myotonic.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Genetic information

Advocacy

Speakers

E-mail list

Educational materials include:

Fact sheet(s)

Website

Newsletter

Journal articles on condition

Bibliography

Research updates

Video(s)/Movie(s)

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals