Pacific Northwest Friends of FSH Research

General Organizational Information

Organization Name:

Organization Acronym:

Friends of FSH Research

Year Established:

2004

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to impact the lives of those affected by FSH Muscular Dystrophy by: financially supporting FSHD research, stimulating new research and funding pilot studies, and supporting researchers by hosting FSHD research workshops.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Facioscapulohumeral Muscular Dystrophy 1A

Organizational Contact Information

Prefix:

Ms.

Title:

President

Degree:

Master's

First Name:

Teresa

Middle Initial:

Last Name:

Colella

Address:

217 19th Place

Kirkland, 98033

United States

See map: Google Maps

Phone:

+1 425 827 8954

Fax:

+1 425 576 9245

Email:

fishauction@fshfriends.org

Website Address:

http://www.fshfriends.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

Range of services include:

Non-medical services

Political action

Advocacy

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Research updates

Video(s)/Movie(s)

Conferences/workshops for:

Researchers

Research Management:

Awarding research grants

Major research interests of the organization:

FSHD Research