Joshua Frase Foundation

General Organizational Information

Organization Name:

Organization Acronym:

JFF

Year Established:

1997

Mission Statement:

The Joshua Frase Foundation is dedicated to supporting ongoing medical research for myotubular myopathy and other related congenital myopathies.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Organizational Contact Information

First Name:

Alison

Last Name:

Frase

Address:

c/o KMC Productions 222 Forbes Rd. Suite 207

Braintree, MA, 02184

Phone:

+1 781 356 6616

Fax:

+1 781 356 6617

Email:

info@joshuafrase.org

ListServe:

http://health.groups.yahoo.com/group/Myotubular_Myopathy/

Website Address:

http://www.joshuafrase.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

The public

Media

Students

Researchers

Other

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer support

Other

Educational materials include:

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Other

Financial assistance for:

Other