Batten Disease Support and Research Association

General Organizational Information

Organization Name:

Organization Acronym:

BDSRA

Year Established:

1987

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten disease.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Batten Disease

Kufs Disease

Neuronal Ceroid Lipofuscinosis

Organizational Contact Information

Title:

Executive Director

First Name:

Lance

Middle Initial:

Last Name:

Johnston

Address:

166 Humphries Drive

Reynoldsburg, OH, 43068

United States

See map: Google Maps

Phone:

+1 740 927 4298

Fax:

+1 740 927 7683

Toll Free Number:

+1 800 448 4570

Email:

bdsra1@bdsra.org

Website Address:

http://www.bdsra.org/

Resources and Services Provided

Printed materials available in:

English

Portuguese

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

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

Peer Support

Peer-to-peer counseling

Grief counseling

Medical referrals

Clinical or treatment centers

Genetic information

Loan of medical devices/equipment

Referrals for non-medical services

Non-medical services

Speakers

Telephone helpline

E-mail list

Chat room

Educational materials include:

Pamphlet(s)

Booklet(s)

Website

Newsletter

Research updates

Video(s)/Movie(s)

CD Roms

Lending library

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Cohort Development:

Registry of affected individuals

Blood and Tissue Banking

Number of affected individuals registered:

800

Number of individuals for whom you have banked a DNA sample:

200

Number of individuals for whom you have banked a tissue sample:

Blood and tissue bank name :

MGH & IBR