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Beyond Batten Disease Foundation FY2020 filing

Tax-deductible

Austin, TX501(c)(3)Education EIN 26-3223661Revenue $2.2M in FY2020

On file with the IRSbeyondbatten.org3305 Steck Ave, 78757-8154 · Austin, TXTax-exempt since Mar 2009Publicly supported charity — 170(b)(1)(A)(vi)

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To eradicate juvenile Batten Disease by raising awareness and funds for research to find a treatment or cure.

501(c)(3) charity; gifts are tax-deductible.
82¢ of each $1 spent went to programs.
$290K paid to officers and key staff.
Mission: Form 990 Part I, line 1 · Status: IRS Pub. 78 · Programs: Part IX · Pay: Part VII

Before you give

FY2020 · Form 990Independent: from IRS data, not the org
Download 990
IRS status
501(c)(3)
not on the IRS revocation list
Looks good: listed by the IRS and not on the revocation list.
IRS BMF · Auto-Revocation List
Tax-deductible gifts
Yes
Donations are tax-deductible
Looks good: the IRS lists gifts to it as deductible.
IRS Pub. 78 · IRS BMF
Latest return
FY2025
latest Form 990
Looks good: the latest return is for FY2025, 1 tax year back; within 2 tax years.
IRS e-file · Filing history
Surplus or deficit
2 of 6
filings with a surplus
Average deficit $98K a year · 10% of revenue · last 6 filings
Concern: a surplus in 2 of the last 6 filings.
Pt I · Ln 19 · 6 filings
Spent on programs
82%
of spending
Looks good: 82% of spending went to programs; 75% or more.
Pt IX · Ln 25 · col B
Pay to officers and key staff
$290K
to officers and key staff · 16% of spending
Fine: pay to officers and key staff is 16% of spending; 15% to 20%.
Pt VII · Sec A
Cash reserves
3 mo
of spending, in cash
Plus $2.5M in investments, Pt X · Ln 11–13
Looks good: 3.1 months of spending in cash; 3 or more.
Pt X · Ln 1–2 · Pt I · Ln 18
Named funders
9
named funders · $62K
Looks good: 9 funders name it on their filings; 3 or more.
Funders’ Sch. I, 990-PF
Liabilities
$177K
5% of total assets
Looks good: liabilities are 5% of assets; 50% or less.
Pt X · Ln 26
Independent board members
6
of 6 voting members
Looks good: 6 of 6 voting members are independent, a majority.
Pt VI · Ln 1a–1b
Looks goodFineWorth a lookConcernNo data yetTap a box for the reason.
Revenue
$2.2M
Spent
$1.8M
To programs
82%
Net assets
$3.7M
By yearFY2020–FY2025
Revenue
$2.2M
FY2020
Tap a bar for its year
Revenue by fiscal year
FY2020$2.2M
FY2021$908K
FY2022$1.2M
FY2023$1.0M
FY2024$538K
FY2025$306K
Expenses
$1.8M
FY2020
Tap a bar for its year
Expenses by fiscal year
FY2020$1.8M
FY2021$665K
FY2022$1.2M
FY2023$1.0M
FY2024$1.1M
FY2025$893K
Net assets
$3.7M
FY2020
Tap a bar for its year
Net assets by fiscal year
FY2020$3.7M
FY2021$3.8M
FY2022$3.4M
FY2023$3.0M
FY2024$2.0M
FY2025$1.7M

From the FY2020 Form 990 (year ending June 2020) · see the original

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You’re viewing the FY2020 filing — not the latest on file. See the latest (FY2025) →

Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Mar 2009.

IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File

Where the money goes

82 cents of each dollar spent went to programs.

Program services 82% · $1.5M Management & general 12% · $220K Fundraising 6% · $118K

Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.

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Who runs it and what they're paid

8 people listed on the 990; $290K paid to officers and key staff.

Part VII, Section A · reportable compensation · most recent filed roster (FY2019); the FY2020 filing did not itemize Part VII
Mary Beth Kiser
President/CEO and Secretary
$157,753Pt VII · Sec A
Danielle Kerkovich
Scientific Officer
$131,959Pt VII · Sec A
$0Pt VII · Sec A
T Craig Benson
Board Chair
$0Pt VII · Sec A
Will Murphy
Director
$0Pt VII · Sec A
$0Pt VII · Sec A
$0Pt VII · Sec A
Jeff Hunt
Director
$0Pt VII · Sec A

Danielle Kerkovich’s $8K as Scientific Officer is at the 7th percentile of top reported officer pay among 1613 $100K–1M education nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.

Compensation history total reportable pay by year · 2 named individuals · Part VII

NameFY2023FY2022FY2021FY2020
Mary Beth Kiser———$157,753
Danielle Kerkovich$7,800$57,237$69,304$131,959

Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.

See Beyond Batten Disease Foundation executive salaries →

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Questions the 990 asks

The form asks each of these directly. These are the filed answers.

  • Family or business ties among officersPt VI · Ln 2No
  • Top official's pay set by an independent reviewPt VI · Ln 15aYes
  • Loans to or from officersSch L · Pt II1 listed

Programs and updates

Fund research and raise awareness to find a cure for juvenile Batten disease.

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Provided by the organization

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1 program · $1.5M · in their own filed words · FY2019
01

To accelerate the discovery and development of medicines to prevent, treat and cure juvenile batten disease. This is done through granting funds and contracting services with academic institutions, biotechnology companies, and other organizations with the capacity to assist in achieving our goals.

$1.5Mprogram expense

Funders

Who pays for it.

From grant filings on record. Receipts are incomplete: individual donors are never listed.

Grants

Schedule I · received and paid
Grants received · FY2024
Paypal Charitable Giving FundFY2024$15K
Fidelity Investments Charitable Gift FundFY2024$12K
American Online Giving Foundation INCFY2024$11K
The Hillcrest FoundationFY2024$10K
National Philanthropic TrustFY2024$7K
Donor Advised Charitable Giving INCFY2024$5K
The Bierly-Boasberg FoundationFY2024$1K
The Herndon Family FoundationFY2024$1K
Total grants receivedfrom 9 funders$62K
See all 9 funders →
Grants paid · 2 grants · $45K · 2019–2021
Care Beyond DiagnosisNC · FY2021$25,000
Baylor College of MedicineTX · FY2019$20,000

By the numbers

The FY2020 990, line by line.

Download 990
from philanthropy.org
1The main four
Money inPt VIII
$2.2M
Ln 12
Gifts and grantsLn 1h$1.6M
Other incomeLn 4–11$533K
Investment incomeLn 3$3K
Money outPt IX
$1.8M
Ln 25
Programscol B$1.5M
Managementcol C$220K
Fundraisingcol D$118K
Owns and owesPt X
$3.7M
net assets · Ln 32
Cash and savingsLn 1–2$469K
Total assetsLn 16$3.9M
LiabilitiesLn 26$177K
PeoplePt VI, VII
8
listed · VII A
PaidVII A2
Voting boardVI 1a6
IndependentVI 1b6
2In more detail
Revenue in detailPt VIII
Gifts and grantsLn 1h$1.6M
Fundraising eventsLn 1c$294K
Investment incomeLn 3$3K
Other incomeLn 4–11$533K
Total revenueLn 12$2.2M
Assets in detailPt X, end of year
CashLn 1$92K
SavingsLn 2$377K
Cash and savings togetherLn 1–2$469K
InvestmentsLn 11–13$2.5M
Total assetsLn 16$3.9M
LiabilitiesLn 26$177K
Net assetsLn 32$3.7M
OperationsPt I, VI
EmployeesI 50
VolunteersI 6400
Fiscal year endsHeaderJune
Conflict-of-interest policyVI 12aYes
Whistleblower policyVI 13Yes
Records policyVI 14Yes
3Year over year
Balance sheet, start vs end of yearPt X · col A, B
LineStart FY20End FY20
Cash and savingsLn 1–2$788K$469K
InvestmentsLn 11–13$2.5M$2.5M
Total assetsLn 16$3.5M$3.9M
LiabilitiesLn 26$219K$177K
Net assetsLn 32$3.3M$3.7M
4Every line
Statement of functional expensesPt IX · every line
LineTotalProgramsManagementFundraising
Grants to domestic organizationsLn 1$20K$20K
Pay of current officers, directors and key staffLn 5$145K$87K$43K$15K
Other salaries and wagesLn 7$45K$27K$13K$5K
Other employee benefitsLn 9$7K$4K$701$2K
Payroll taxesLn 10$14K$8K$1K$4K
Management feesLn 11a$183K$114K$49K$19K
Legal feesLn 11b$142K$89K$38K$15K
Accounting feesLn 11c$17K$11K$5K$2K
Other fees for servicesLn 11g$1.1M$1.1M$30K$11K
Advertising and promotionLn 12$3K$203$2K$483
Office expensesLn 13$75K$12K$25K$38K
OccupancyLn 16$46K$35K$5K$5K
TravelLn 17$14K$11K$864$2K
InterestLn 20$4K$0$4K$0
InsuranceLn 23$1K$0$1K$0
Total functional expensesLn 25$1.8M$1.5M$220K$118K

Filing history

YearMoney inMoney outIn minus outNet assetsDownload
FY2025 Latest $306K$893K−$587K$1.7M 990 PDF
FY2024 $538K$1.1M−$578K$2.0M 990 PDF
FY2023 $1.0M$1.0M−$8K$3.0M 990 PDF
FY2022 $1.2M$1.2M−$875$3.4M 990 PDF
FY2021 $908K$665K$243K$3.8M 990 PDF
FY2020 Viewing $2.2M$1.8M$342K$3.7M 990 PDF

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Schedules filed Part IV

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants A · Public support J · Pay O · Explanations
See the full FY2020 990 (6 parts)
Part I · Summary $2,176,365 revenue, 12 lines filed
I-8 Contributions and grantsPrior year $4,652,945$1,640,342
I-9 Program service revenue$0
I-10 Investment incomePrior year $4,083$3,471
I-11 Other revenuePrior year −$16,390$532,552
I-12 Total revenuePrior year $4,640,638$2,176,365
I-13 Grants and similar amounts paid$20,000
I-14 Benefits paid to members$0
I-15 Salaries and benefitsPrior year $423,120$209,938
I-16a Professional fundraising fees$0
I-17 Other expensesPrior year $1,157,511$1,604,615
I-18 Total expensesPrior year $1,580,631$1,834,553
I-19 Revenue less expensesPrior year $3,060,007$341,812
Part VI · Governance 6 of 6 board members independent, no flags
VI-1a Voting members of the governing body6
VI-1b Independent voting members6
VI-2 Family or business relationship among officers or directorsNo
VI-12a Written conflict of interest policyYes
VI-13 Written whistleblower policyYes
VI-14 Document retention and destruction policyYes
VI-15a Process for setting top official's payYes
Part VIII · Statement of revenue $2,176,365 across 9 lines filed
VIII-1b Membership dues$4,481
VIII-1c Fundraising events$293,596
VIII-1f All other contributions, gifts and grants$1,342,265
VIII-1h Total contributions, gifts and grants$1,640,342
VIII-3 Investment incomeUnrelated business $0 · Excluded from tax $3,471$3,471
VIII-5 RoyaltiesRelated to mission $0 · Unrelated business $0 · Excluded from tax $250,000$250,000
VIII-8 Net income from fundraising eventsUnrelated business $0 · Excluded from tax $317,487$317,487
VIII-11a-d Other revenue, itemized rows (sum of 11a–11d as filed)Related to mission $0 · Unrelated business −$34,935 · Excluded from tax $0−$34,935
VIII-12 Total revenueRelated to mission $0 · Unrelated business −$34,935 · Excluded from tax $570,958$2,176,365
Part IX · Statement of functional expenses $1,834,553 across 15 lines filed
IX-1 Grants to domestic organizationsPrograms $20,000$20,000
IX-5 Pay of current officers, directors and key staffPrograms $86,550 · Management $43,007 · Fundraising $15,299$144,856
IX-7 Other salaries and wagesPrograms $26,702 · Management $13,268 · Fundraising $4,720$44,690
IX-9 Other employee benefitsPrograms $3,966 · Management $701 · Fundraising $1,970$6,637
IX-10 Payroll taxesPrograms $8,218 · Management $1,453 · Fundraising $4,084$13,755
IX-11a Management feesPrograms $114,135 · Management $49,480 · Fundraising $18,935$182,550
IX-11b Legal feesPrograms $88,594 · Management $38,408 · Fundraising $14,698$141,700
IX-11c Accounting feesPrograms $10,768 · Management $4,668 · Fundraising $1,786$17,222
IX-11g Other fees for servicesPrograms $1,079,880 · Management $29,808 · Fundraising $11,406$1,121,094
IX-12 Advertising and promotionPrograms $203 · Management $2,082 · Fundraising $483$2,768
IX-13 Office expensesPrograms $11,847 · Management $25,273 · Fundraising $37,553$74,673
IX-16 OccupancyPrograms $35,038 · Management $5,311 · Fundraising $5,311$45,660
IX-17 TravelPrograms $11,073 · Management $864 · Fundraising $1,766$13,703
IX-20 InterestPrograms $0 · Management $3,961 · Fundraising $0$3,961
IX-23 InsurancePrograms $0 · Management $1,284 · Fundraising $0$1,284
IX-25 Total functional expensesPrograms $1,496,974 · Management $219,568 · Fundraising $118,011$1,834,553
Part X · Balance sheet $3,864,609 assets, 14 lines filed
X-1 Cash, non-interest-bearingStart of year $83,667$92,440
X-2 Savings and temporary cash investmentsStart of year $704,545$376,868
X-3 Pledges and grants receivableStart of year $211,289$146,423
X-4 Accounts receivableStart of year $5,151$718,880
X-9 Prepaid expenses and deferred chargesStart of year $7,330$11,998
X-12 Other securitiesStart of year $2,518,000$2,518,000
X-16 Total assetsStart of year $3,529,982$3,864,609
X-17 Accounts payable and accrued expensesStart of year $163,593$129,532
X-19 Deferred revenueStart of year $9,136$1,077
X-26 Total liabilitiesStart of year $219,334$177,214
X-27 Net assets without donor restrictionsStart of year $3,099,359$3,540,972
X-28 Net assets with donor restrictionsStart of year $211,289$146,423
X-32 Total net assets or fund balancesStart of year $3,310,648$3,687,395
X-33 Total liabilities and net assetsStart of year $3,529,982$3,864,609
Part XI · Reconciliation of net assets $3,687,395 net assets at year end
XI-1 Total revenue$2,176,365
XI-2 Total expenses$1,834,553
XI-3 Revenue less expenses$341,812
XI-4 Net assets at start of year$3,310,648
XI-9 Other changes in net assets$34,935
XI-10 Net assets at end of year$3,687,395

Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File

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