- Revenue 2024
- $601,964
- Expenses 2024
- $967,326
Program services were 70.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- G8XZ
- Classification
- 1000
- Street
- 4285 MORSE RD PMB 104
These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).
Group exemption
The central organization of an IRS group exemption (group number 5182), covering 2 subordinate organizations. matched by us
The IRS lists each organization's group exemption number; we match a subordinate to its central organization by that number and the affiliation code the IRS assigns.
-
SOUTHEAST CHAPTER
BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION EIN 56-1918696 RALEIGH, NC
-
METRO NY NJ CHAPTER
BATTEN DISEASE SUPPORT AND RESEARCH ASSOC EIN 11-3618833 MANALAPAN, NJ
Officers and directors · 2024
As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
AMY FENTON PARKER
PRESIDENT &
- Total calculated
- $100,000
- From this org
- $100,000
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
-
DARLENE ROYALTY
BOARD CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
BARBARA WUEBBELS
BOARD VICE C
- Total calculated
- $0
- Hours/week
- 1
-
BARBARA MCDONOUGH
SECRETARY
- Total calculated
- $0
- Hours/week
- 1
-
FRED SURREY
TREASURER
- Total calculated
- $0
- Hours/week
- 1
-
JOHN IRELAND
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
WAYNE KIEFER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
KATE HALLER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
DAVE PEARCE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
SUZETTE JAMES
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
FERNANDA LEAL-PARDINAS
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
ANTHONY FERRANDINO
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
DONNA FOGEL
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
JOHN PATTERSON
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.
Filings
-
2024
- Revenue
- $601,964
- Expenses
- $967,326
- Contributions
- $566,255
- Grants paid
- $135,863
-
2023
- Revenue
- $746,147
- Expenses
- $952,036
- Contributions
- $724,656
- Grants paid
- $82,000
-
2022
- Revenue
- $1,099,485
- Expenses
- $858,302
- Contributions
- $1,064,250
- Grants paid
- $40,000
The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.
Grants made
-
2023 RESEARCH
-
$40,000
2022 RESEARCH
-
$23,796
2024 RESEARCH
-
NATIONWIDE CHILDREN'S HOSPITAL
$23,411
2024 RESEARCH
-
2024 RESEARCH
-
$19,539
2024 RESEARCH
-
2024 RESEARCH
-
RUSH UNIVERSITY MEDICAL CENTER
$12,544
2024 RESEARCH
-
NYU GROSSMAN SCHOOL OF MEDICINE
$11,304
2024 RESEARCH
-
2024 RESEARCH
The 10 largest by cash amount. The API serves every itemized grant.
Grants received
-
$65,000
2023 TO FUND RESEARCH FOR A CURE FOR AND TO PROMOTE AWARENESS OF BATTEN DISEASE.
-
$65,000
2022 TO FUND RESEARCH FOR A CURE FOR AND TO PROMOTE AWARENESS OF BATTEN DISEASE.
-
2022 RESEARCH AND TRIALS TOWARD THE ULTIMATE GOAL OF IRRADICATING BATTEN DISEASE
-
2025 RESEARCH AND TRIALS TOWARD THE ULTIMATE GOAL OF IRRADICATING BATTEN DISEASE
-
2023 RESEARCH AND TRIALS TOWARD THE ULTIMATE GOAL OF IRRADICATING BATTEN DISEASE
-
2024 RESEARCH AND TRIALS TOWARD THE ULTIMATE GOAL OF IRRADICATING BATTEN DISEASE
-
2024 UNRESTRICTED GENERAL SUPPORT
-
2023 HEALTH
-
2023 For grant recipient's exempt purposes
-
$8,913
2024 TO FUND RESEARCH FOR A CURE FOR AND TO PROMOTE AWARENESS OF BATTEN DISEASE.
The 10 largest by cash amount. The API serves every itemized grant.
Other IRS files
Auto-Revocation List
Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.
Publication 78
Listed as of 10 September 2026, under deductibility GROUP.
These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.
What this page reflects
The IRS Business Master File ingested 5 October 2026, which is when the registration facts above were last refreshed for every organization. Returns through tax year 2024, the newest we have parsed for this organization.