Families of Spinal Muscular Atrophy

General Organizational Information

Organization Name:

Organization Acronym:

FSMA

Year Established:

1984

Type of organization:

Condition(s)-specific organization

Mission Statement:

Families of Spinal Muscular Atrophy is dedicated to advancing research and supporting families by eradicating SMA by promoting and supporting research; helping families cope with SMA through informational programs and support; and educating the public and professional community about SMA.

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:

Spinal Muscular Atrophy (SMA)

Organizational Contact Information

Title:

Executive Director

First Name:

Kenneth

Middle Initial:

Last Name:

Hobby

Address:

925 Busse Rd.

Elk Grove Village, IL, 60007

United States

See map: Google Maps

Phone:

+1 847 367 7620

Fax:

+1 847 367 7623

Toll Free Number:

+1 800 886 1762

Email:

info@fsma.org

Website Address:

http://www.fsma.org

Resources and Services Provided

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Grief counseling

Clinical or treatment centers

Genetic information

Loan of medical devices/equipment

Referrals for non-medical services

Political action

Advocacy

Speakers

Telephone helpline

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Magazine

Website

Newsletter

Slides

Research updates

Video(s)/Movie(s)

Lending library

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Assistive devices

Scholarships