Canavan Research Illinois

General Organizational Information

Organization Name:

Year Established:

2000

Type of organization:

Condition(s)-specific organization

Mission Statement:

Canavan Research Illinois (also known as Canavan Disease Research) is a nonprofit corporation and 501(c)(3) public charity based in Illinois, established in April 2000 to meet a critical need to support medical research to treat, cure, and improve the quality of lives of all children battling Canavan disease, a rare fatal genetic neurological disorder. We further increase public awareness and network Canavan families.

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:

Canavan Disease

Organizational Contact Information

Title:

Vice President

First Name:

Peggy

Last Name:

Shapiro-Nyeholt

Address:

PO Box 8194

Rolling Meadows, IL, 60008-8194

United States

See map: Google Maps

Phone:

+1 847 222 0736

Toll Free Number:

+1 800 833 2194

Email:

info@canavanresearch.org

Website Address:

http://www.canavanresearch.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 research studies

Referrals to matching individuals/families

Genetic information

Awareness Programs

Telephone helpline

Educational materials include:

Fact sheet(s)

Website

Newsletter

Research updates

Video(s)/Movie(s)

Resource guide

Conferences/workshops for:

Researchers

Research Management:

Linking researchers and families

Awarding research grants

Providing information about clinical trials

Current projects:

research directed towards Stem Cell Therapy to generate proof-of-principle evidence in support of the development of a cell-based therapy to cure Canavan

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$69144