Batten Disease Support And Research Association
Batten Disease Support And Research Association
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About this organization
Mission
The Batten Disease Support and Research Association (BDSRA) is the largest nonprofit organization in North America dedicated to funding research, advancing education, providing family support services, and raising awareness of the disease and its impact. Founded in 1987, the focus of BDSRA is to help unravel the mysteries of Batten disease by bringing the worlds of science, research, and health care together toward a common goal: the discovery of treatments and cures. Programs and services are designed to connect Batten families with resources and specialized care, build networks for optimal care for patients, educate health professionals and the public about the disease, and assist families in managing the emotional, financial, and medical requirements of those affected. BDSRA's research program is a peer-reviewed grant process that focuses on cutting edge technologies and both applied and basic research, including gene therapy, enzyme replacement, and drug discovery. BDSRA also builds alliances and networks across state and federal legislative channels to raise awareness. By educating policymakers and government leaders, BDSRA adds a unified voice to advocate for research funding. As a rare, fatal, inherited disorder of the nervous system, Batten disease has no known treatment or cure. As a lysosomal storage disorder caused by genetic mutations, Batten disease primarily affects the nervous system. The disease occurs in approximately 2-4 births per 100,000 in the U.S. Early symptoms appear in childhood. There are U.S. Chapters of BDSRA in many regions across the U.S. and Canada, as well as global affiliates in Europe, South America, and Asia. All forms of Batten disease result in a shortened life span, and those diagnosed have extensive needs for comprehensive medical care. As a rare disease, Batten is severely underfunded in research and scientific studies.
About
PROGRAMS SUCH AS THE SIBLING PROGRAM, PARENT/MENTORS AND THE GENERAL BEREAVEMENT PROGRAM ALL WILL HELP TO ALLEVIATE STRESS AND HARDSHIP ON FAMILIES WHOSE LOVED ONES ARE VICTIMS OF BATTEN DISEASE
Interesting data from their 2017 990 filing
The purpose of the non-profit, as set forth in the filing, is “Batten disease support & research association's 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.”.
When discussing its purpose, they were characterized as: “Batten disease support & research association's 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.”.
- The state in which the non-profit is legally authorized to operate is OH, as reported.
- The form of the non-profit reports 4 employees as of 2017.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor advised fund.
- Is not a private foundation.
- Expenses are between $500,000 and $1,000,000+.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is $114,066.
- The CEO salary plan within the organization is not subject to review and approval by an impartial entity.
- The organization elects its board members.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 0 independent voting members.
- The organization was formed in 1987.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $273,748 in salary, compensation, and benefits to its employees.
- The organization pays $76,598 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization's financial statements were reviewed by an accountant.
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