Cause IQ organization profile

Beyond Batten Disease Foundation

Beyond Batten Disease Foundation is a organizations supporting multiple disease-focused nonprofit based in Austin, TX that was founded in 2008. As of 2019 they had $4.6 million in revenue and $3.5 million in assets.

Beyond Batten Disease Foundation was. Beyond Batten Disease Foundation was established to eradicate Batten disease by funding research to find a cure, and by developing a simple rare disease genetic test to detect the gene mutations for Batten disease...

EIN:

26-3223661

City:

Austin

State:

Texas

Website:

beyondbatten.org

Founded:

2008

Type:

501(c)(3)

NTEE:

G12: Organizations supporting multiple disease or disorder focused nonprofits

Revenue:

$4,640,638

Assets:

$3,529,982

Employees:

Fiscal year end:

June

Revenue trends:

Asset trends:

Program areas at Beyond Batten Disease Foundation

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. The Foundation also spearheads the development of think-tank conferences and unique partnerships to drive juvenile Batten Disease research.

Form 990s for Beyond Batten Disease Foundation

Fiscal year ending	Date received by IRS	Form	PDF link
2019-06	Oct 6, 2020	990	View PDF
2018-06	Feb 21, 2019	990	View PDF
2017-06	Dec 15, 2017	990	View PDF
2016-06	Jul 26, 2017	990	View PDF
2015-06	Jan 20, 2016	990	View PDF
...and five more Form 990 PDFs

Financials for Beyond Batten Disease Foundation

Field	2019	2018	% Change
Federated campaigns	$0	$0
Membership dues	$0	$0
Fundraising event contributions	$1,152,200	$109,587	951.4%
Related organizations	$0	$0
Government grants (contributions)	$0	$0
Normal grants, contributions, etc.	$3,500,745	$1,439,187	143.2%
<em>Non-cash contributions included in above</em>	$2,543,276	$103,995	2345.6%
Total grants, contributions, etc.	$4,652,945	$1,548,774	200.4%

Field	2019	2018	% Change
Total grants, contributions, etc.	$4,652,945	$1,548,774	200.4%
Program services	$0	$0
Investment income and dividends	$4,083	$35	11565.7%
Tax-exempt bond proceeds	$0	$0
Royalty revenue	$0	$0
Net rental income	$0	$0
Net gain from sale of non-inventory assets	$0	$0
Net income from fundraising events	$-16,390	$510,254	-103.2%
Net income from gaming activities	$0	$0
Net income from sales of inventory	$0	$0
Miscellaneous revenues	$0	$0
Total revenues	$4,640,638	$2,059,063	125.4%

Field	2019	2018	% Change
Grants to govts. and orgs. in USA	$0	$180,055	-100%
Grants to individuals in USA	$0	$0
Grants to govts., orgs., and individuals outside USA	$0	$40,568	-100%
Benefits paid to or for members	$0	$0
Compensation of current officers, etc.	$301,127	$285,050	5.6%
Compensation not included above, to disqualified persons	$0	$0
Non-officer salaries and wages	$94,050	$113,456	-17.1%
Pension/retirement accruals and contributions	$0	$0
Other employee benefits	$1,103	$8,204	-86.6%
Payroll taxes	$26,840	$27,922	-3.9%
Management fees	$0	$0
Legal fees	$157,399	$8,728	1703.4%
Accounting fees	$28,523	$34,705	-17.8%
Lobbying fees	$0	$0
Pro. fundraising fees	$0	$0
Investment mgmt fees	$0	$0
Other fee-for-service	$705,963	$20,815	3291.6%
Advertising and promotion	$63,996	$151,208	-57.7%
Office expenses	$96,994	$100,143	-3.1%
Information tech. expenses	$16,253	$12,979	25.2%
Royalty expenses	$0	$0
Occupancy	$44,525	$17,818	149.9%
Travel	$28,497	$23,477	21.4%
Public official travel and entertainment	$0	$0
Conferences, meetings, etc.	$10,153	$0	999%
Interest	$3,961	$17,589	-77.5%
Payments to affiliates	$0	$0
Depreciation, amortization, etc.	$0	$0
Insurance	$1,247	$1,334	-6.5%
All other expenses	$0	$0
Total expenses	$1,580,631	$1,044,051	51.4%

Field	2019	2018	% Change
Cash (non-interest-bearing)	$83,667	$335,726	-75.1%
Savings, short-term investments, etc.	$704,545	$188
Pledges and grants receivable	$211,289	$286,544	-26.3%
Accounts receivable	$5,151	$55,393	-90.7%
Loans receivable from officers, directors, etc.	$0	$0
Loans receivable from other disqualified persons	$0	$0
Notes and loans receivable	$0	$0
Inventories for use	$0	$0
Prepaid expenses and deferred charges	$7,330	$44,676	-83.6%
Buildings, equipment, etc. post-depreciation	$0	$0
Investments, publicly traded securities	$0	$0
Investments, other securities	$2,518,000	$0	999%
Investments, program-related	$0	$0
Intangible assets	$0	$0
Other assets	$0	$0
Total assets	$3,529,982	$722,527	388.6%

Field	2019	2018	% Change
Accounts payable and accrued expenses	$163,593	$408,783	-60.0%
Grants payable	$0
Deferred revenue	$9,136	$16,498	-44.6%
Tax-exempt bond liabilities	$0	$0
Escrow or custodial account liability	$0	$0
Loans payable to officers and disqualified persons	$46,605	$46,605
Secured mortgages and notes payable to unrelated third parties	$0	$0
Unsecured notes and loans payable to unrelated third parties	$0	$0
Other liabilities	$0	$0
Total liabilities	$219,334	$471,886	-53.5%

Field	2019	2018	% Change
Unrestricted net assets	$3,099,359	$-35,903	8732.6%
Temporarily restricted net assets	$211,289	$286,544	-26.3%
Permanently restricted net assets	$0	$0

Vendors for Beyond Batten Disease Foundation

Vendor	Services	Date
DonorPerfect	Fundraising software	2020-06-18
██████	Fundraising software	2020-06-18
███████ ███ ████	Fundraising software; Payment processing	2020-06-18
█████████	Content management system software	2020-06-18
████████ ███████	Marketing software	2020-06-18
██████ ███	Software	2020-03-17
██████ ███ ██████████ ███	Tax accounting	2020-03-01
█████ ████████ ███ ████	Tax accounting	2014-01-03

Personnel at Beyond Batten Disease Foundation

Name	Title	Compensation	Most recent data
Mary Beth Kiser	President and Chief Executive Officer	$160,081	Oct. 6, 2020
Danielle M. Kerkovich	Principal Scientist / Scientific Officer	$131,346	Sept. 29, 2020
███████ ██████████ ████	Director of the Will Herndon Research Fund	-	Sept. 29, 2020
█████ █████████	Communications Manager	-	Sept. 29, 2020
██ █████ ██████	Chair Board / Board Chair	$0	Sept. 29, 2020
███ ███████	Treasurer	$0	June 30, 2018
███████ █ ███████	Vice President , Secr , Treasurer	$0	June 30, 2016

Peer organizations supporting multiple disease or disorder focused nonprofits

	Name	Type	Revenue	Location
1	Angelman Syndrome Foundation	501(c)(3)	$2.3 million	Aurora, IL
2	LeukemiaTexas	501(c)(3)	$1.2 million	Irving, TX
3	The Morgan Adams Foundation	501(c)(3)	$1.3 million	Denver, CO
4	CancerFree KIDS	501(c)(3)	$1.2 million	Loveland, OH
5	Tower Cancer Research Foundation (TCRF)	501(c)(3)	$3.7 million	Beverly Hills, CA
6	Project Purple	501(c)(3)	$1.4 million	Seymour, CT
7	Hirshberg Foundation for Pancreatic Cancer Research	501(c)(3)	$1.8 million	Los Angeles, CA
8	National Gaucher Foundation (NGF)	501(c)(3)	$5.5 million	Rockville, MD
9	The National Pancreas Foundation	501(c)(3)	$1.4 million	Bethesda, MD
10	Cancer Institute of New Jersey Foundation	501(c)(3)	$3.1 million	New Brunswick, NJ
11	Brain Aneurysm Foundation	501(c)(3)	$1.6 million	Hanover, MA
12	CONCERN Foundation	501(c)(3)	$2.2 million	Los Angeles, CA
13	Foundation of Yuma Regional Medical Center	501(c)(3)	$1.7 million	Yuma, AZ
14	Rally Foundation	501(c)(3)	$4.3 million	Atlanta, GA
15	The Alliance Pharmacy	501(c)(3)	$1.8 million	Westbury, NY
16	American Parkinson Disease Association (APDA)	501(c)(3)	$11 million	Staten Island, NY
17	Kay Yow Cancer Foundation	501(c)(3)	$2.0 million	Raleigh, NC
18	Family Reach Foundation	501(c)(3)	$7.0 million	Boston, MA
19	Bringing Hope Home	501(c)(3)	$1.6 million	Malvern, PA
20	Lazarex Cancer Foundation	501(c)(3)	$3.0 million	Danville, CA
21	Connecticut Cancer Foundation	501(c)(3)	$1.6 million	Old Saybrook, CT
22	Kure It	501(c)(3)	$1.1 million	Irvine, CA
23	Breast Cancer Alliance	501(c)(3)	$2.2 million	Greenwich, CT
24	Les Turner ALS Foundation	501(c)(3)	$3.6 million	Skokie, IL
25	Triple Negative Breast Cancer Foundation	501(c)(3)	$1.2 million	Norwood, NJ

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Cause IQ organization profile

Beyond Batten Disease Foundation

Program areas at Beyond Batten Disease Foundation

Form 990s for Beyond Batten Disease Foundation

Financials for Beyond Batten Disease Foundation

Vendors for Beyond Batten Disease Foundation

Personnel at Beyond Batten Disease Foundation

Peer organizations supporting multiple disease or disorder focused nonprofits

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