FRAXA Research Foundation

General Organizational Information

Organization Name:

Organization Acronym:

FRAXA

Year Established:

1994

Brochure:

BROCHURE.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to support research aimed at finding specific treatments and a cure for Fragile X syndrome, the leading inherited cause of mental impairment.

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:

Fragile X Syndrome

Organizational Contact Information

Title:

President

First Name:

Katie

Last Name:

Clapp

Address:

45 Pleasant St.

Newburyport, MA, 01950

Phone:

+1 978 462 1866

Fax:

+1 978 463 9985

Email:

kclapp@fraxa.org

Website Address:

http://www.fraxa.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Advocacy

Speakers

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Slides

Research updates

Video(s)/Movie(s)

CD Roms

Conferences/workshops for:

Researchers

Professionals

Research Management:

Linking researchers and families

Participant recruitment

Initiating and conducting research

Awarding research grants

Organization has intellectual property (IP)

Providing information about clinical trials

Major research interests of the organization:

find specific treatments for fragile X

Current projects:

http://fraxa.org/research.aspx

Current Request for Proposals:

http://fraxa.org/applyinggrants.aspx

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$1500000