Batten Disease Support and Research Association (Reynoldsburg, OH)


  • Name:Amy Kirk
  • Title:Coordinator of Family Services

Organization Address

  • Organization Name:Batten Disease Support and Research Association
  • Address:166 Humphries Drive
    Reynoldsburg, OH 43068
    United States

Organization Phone

  • Main phone:740-927-4298
  • Main fax:740-927-7683

Organization Web

User Phone

  • Direct phone:1-800-448-4570

User Email


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  • Mission:
  • Batten Disease is an unrecognized and unknown disease to, not only average citizens, but much of the medical and healthcare world as well. Batten Disease affects 2-4 children out of every 100,000 births and is a genetic recessive disorder. This disease causes death of neurons, or brain cells, and leads to blindness, loss of motor skills, loss of mobility, loss of speech, and eventually death. There is currently no treatment for the disease and no cure. While the hope in research remains strong, at this time we are only able to treat the symptoms of the disease. Our Mission Statement 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”.

  • History:
  • Batten Disease Support and Research Association (BDSRA) was founded in 1987 in Spanaway, Washington, by the mother of three children with Juvenile Batten disease. The organization started out with 60 families in the USA and Canada. Today, BDSRA has chapters in North America and throughout the globe serving over 1,000 families in many different capacities. Over the last 20 years, we have created and supported over 25 regional chapter, developed written materials for family and professional education, held an annual Family Conference, and produced a quarterly newsletter (The Illuminator) and comprehensive website (

  • Year established:1987
  • Endowment:Unknown


  • Executive / Trustee board size:13
  • Advisory board size:12
  • Staff size:4

Board and Executive Names

  • Board Members / Trustees:
  • George Maxim--President
    Kim Zellmer--1st VP
    Eric Faret--2nd VP
    Joel Karg--Treasurer
    Linda Houghtby--Secretary
    Larry McDonough
    Wendy Bills, PhD
    Gregg Froio
    Carl Schwartze
    Jane Emanuel, MD
    Marcus Kerner, Esq
    Warren Shuros
    Fred Weaver

  • Executive Director / President:
  • Lance W. Johnston--Executive Director

Staff Names

  • Key Staff:
  • Nancy Carney, RN--Medical/Liaison Educator
    Amy Kirk, MSW, LSW--Coordinator of Family Services
    Donna Gunn--Secretary


  • Organization type:Grantseeker
  • Country of registration:United States
  • Tax Determination Letter:Received Determination Letter
  • IRS Section:501(c)(3)
  • Tax ID:91-1397792

Other Organization Web

IRS Business Master File Information

  • EIN:911397792
  • Sort (Secondary) Name:
  • Care Of Name:
  • Organization Address:1175 DUBLIN ROAD
  • Organization City:COLUMBUS
  • Organization State:OH
  • Organization Zip:43215-1198
  • Group Exemption Number:5182
  • Subsection Code:03
  • Classification Code(s):1
  • Subsection/Classification Desc.:Charitable Organization
  • Affiliation Code:6
  • Ruling Date:February, 1994
  • Deductibility Code:1
  • Foundation Code:15
  • Foundation Code Desc.:Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi)
  • Activity Code(s):320
  • Activity Code Desc.(s):Boy Scouts, Girl Scouts, etc.
  • Organization Code:1 (Corporation)
  • Exempt Org. Status Code:01 (Unconditional Exemption)
  • Tax Period:December, 2016
  • Filing Requirement Category:01 (990 (all other) or 990EZ return)
  • Accounting Period:December
  • NTEE Code:G8XZ
  • Asset Amount:$664,508
  • Asset Code:5 ($500,000 - $999,999)
  • Income Amount:$812,976
  • Income Code:5 ($500,000 - $999,999)
  • 990 Revenue Amount:$812,976
  • Last Updated:3/21/2018 7:26:14 pm

This information is directly from the IRS Exempt Organization Business Master File at Exempt Organizations Business Master File Extract. This information is not under the control of the Common Grant Application and is collected and compiled and can only be changed by the IRS.