Civic Intelligence

National Fabry Disease Foundation

990 • Fiscal year 2012 • EIN 20-2944028

Jun 01, 2011 to May 31, 2012 • Filed on May 29, 2013

Organization ProfileWWW.FABRYDISEASE.ORG
4301 Connecticut Ave NW Suite 40420008
Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

55th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2012 filings • NTEE G • <$500k nonprofits • Source year 2012

Liabilities / Revenue

Score unavailable

No value available

Liabilities-to-revenue requires both liabilities and revenue on this filing.

Source year 2012

Net Margin

Score unavailable

No value available

Net margin requires both revenue and expenses on this filing.

Source year 2012

Top Officer Pay

Score unavailable

No value available

This filing does not contain officer compensation rows.

Source year 2012

Asset Growth

44th percentile

-2.7%

Faster asset growth than 44% of similar nonprofits.

2012 filings • NTEE G • <$500k nonprofits • Annualized from 2011 to 2012

Revenue Growth

Score unavailable

No value available

No valid filing value is available for this score.

Balance Sheet
Liabilities / Assets55th percentile

Assets

Down

$39,120

Down $1,077 (-2.7%) from 2011

Net Assets

Down

$39,120

Down $1,077 (-2.7%) from 2011

Liabilities

Flat

$0

Flat from 2011

Revenue And Expenses
Liabilities / RevenueScore unavailableNet MarginScore unavailable

Revenue

-

No earlier filing loaded for comparison.

Expenses

Up

$246,677

Up $98,304 (+66%) from 2011

Net Income

-

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset Growth44th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$800K$600K$400K$200K$0Assets 2010: $36,838Liabilities 2010: $0Net Assets 2010: $36,8382010Assets 2011: $40,197Liabilities 2011: $0Net Assets 2011: $40,1972011Assets 2012: $39,120Liabilities 2012: $0Net Assets 2012: $39,1202012Assets 2013: $35,114Liabilities 2013: $0Net Assets 2013: $35,1142013Assets 2014: $142,146Liabilities 2014: $0Net Assets 2014: $142,1462014Assets 2015: $151,453Liabilities 2015: $0Net Assets 2015: $151,4532015Assets 2016: $232,750Liabilities 2016: $0Net Assets 2016: $232,7502016Assets 2017: $133,009Liabilities 2017: $0Net Assets 2017: $133,0092017Assets 2018: $258,930Liabilities 2018: $0Net Assets 2018: $258,9302018Assets 2019: $219,230Liabilities 2019: $0Net Assets 2019: $219,2302019Assets 2020: $370,078Liabilities 2020: $0Net Assets 2020: $370,0782020Assets 2021: $342,157Liabilities 2021: $0Net Assets 2021: $342,1572021Assets 2022: $685,818Liabilities 2022: $0Net Assets 2022: $685,8182022Assets 2023: $521,056Liabilities 2023: $0Net Assets 2023: $521,0562023Assets 2024: $413,847Liabilities 2024: $0Net Assets 2024: $413,8472024Assets 2025: $269,505Liabilities 2025: $2,608Net Assets 2025: $266,8972025

Highlighted filing

2012

Assets$39,120
Liabilities$0
Net Assets$39,120
Open 2012 Filing

Operations Trend

Revenue GrowthScore unavailable

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$1.0M$500K$0-$500KRevenue 2010: $164,579Expenses 2010: $145,337Net Income 2010: $19,2422010Revenue 2011: $151,732Expenses 2011: $148,373Net Income 2011: $3,3592011Expenses 2012: $246,6772012Expenses 2013: $315,6432013Revenue 2014: $414,863Expenses 2014: $307,831Net Income 2014: $107,0322014Revenue 2015: $396,935Expenses 2015: $387,628Net Income 2015: $9,3072015Revenue 2016: $470,127Expenses 2016: $388,830Net Income 2016: $81,2972016Revenue 2017: $320,480Expenses 2017: $420,221Net Income 2017: -$99,7412017Revenue 2018: $508,472Expenses 2018: $384,145Net Income 2018: $124,3272018Revenue 2019: $394,250Expenses 2019: $433,950Net Income 2019: -$39,7002019Revenue 2020: $544,803Expenses 2020: $393,955Net Income 2020: $150,8482020Revenue 2021: $188,701Expenses 2021: $216,622Net Income 2021: -$27,9212021Revenue 2022: $572,188Expenses 2022: $228,527Net Income 2022: $343,6612022Revenue 2023: $307,957Expenses 2023: $472,698Net Income 2023: -$164,7412023Revenue 2024: $575,301Expenses 2024: $682,510Net Income 2024: -$107,2092024Revenue 2025: $592,005Expenses 2025: $738,955Net Income 2025: -$146,9502025

Highlighted filing

2012

Revenue-
Expenses$246,677
Net Income-
Open 2012 Filing
Jump To
Filing Snapshot
Filing Period
Jun 1, 2011 to May 31, 2012
Signed
May 29, 2013
Return Version
2011v1.5
Gross Receipts
$245,993
Mission and Program Overview

Mission

To ensure that all individuals with fabry disease are identified, diagnosed and provided an opportunity for treatment in time to avoid a diminished quality-of-life and life-threatening consequences; to provide education and awareness to people with fabry disease and their families, to physicians, and to the public; to provide support and assistance to people with fabry disease and their families; and to conduct and promote research to improve management and treatment for fabry disease.

Major Activities

Activity 2
Community Support - Provide support and assistance to individuals with Fabry Disease and their families. Our community support program is directed to people living with Fabry Disease and their families. We provide daily phone, email and written correspondence to support individuals and families with Fabry disease. We provide patients and families a free 24/7 hotline for counseling; purchase journal articles to share with the community; and provide transportation and other resources to facilitate understanding and management of Fabry Disease and access to treatment. We conduct an annual camp for children and families to connect and share experiences. We provided assistance to bring 35 families from across the country. Because the disease is rare, many patients and their families do not know anyone else living with Fabry disease, and the connections made through our camp program are invaluable within the community.
Filing and Contact Details

Filer

EIN
20-2944028
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IRS990/Activity2/Description0Community Support - Provide support and assistance to individuals with Fabry Disease and their families. Our community support program is directed to people living with Fabry Disease and their families. We provide daily phone, email and written correspondence to support individuals and families with Fabry disease. We provide patients and families a free 24/7 hotline for counseling; purchase journal articles to share with the community; and provide transportation and other resources to facilitate understanding and management of Fabry Disease and access to treatment. We conduct an annual camp for children and families to connect and share experiences. We provided assistance to bring 35 families from across the country. Because the disease is rare, many patients and their families do not know anyone else living with Fabry disease, and the connections made through our camp program are invaluable within the community.
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IRS990/Description0Education and Awareness - Provide education and promote awareness about Fabry Disease. Recent evidence indicates that 10-20 times as many people have Fabry Disease as are currently diagnosed and undergoing treatment. Early intervention has proven to extend patients' life expectancy. Our public education program is designed to reach these undiagnosed individuals by raising awareness of the symptoms of Fabry Disease. We provide various programs to educate physicians to increase recognition and diagnosis. In conjunction with the annual camp, we produce a conference to educate patients on management of Fabry disease and on strategies for living with the disease; current developments in research; advances in treatment, etc. We have over 1,000 followers on our Facebook page and reach many thousands more to include a post that was recently viewed by over 27,000 people in a week. Our comprehensive, educational social media program consists of Facebook, Twitter, a blog, and our Inspire community discussion page.
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IRS990ScheduleA/FactsAndCircumstancesTest0Part II, Line 17a--Financial supporters for the organization are limited to individuals and organizations who are aware of Fabry Disease, so the very nature of Fabry as a rare disease limits our base of support. However, there are several indicators that the organization's support can be broadened in the near term:-The Executive Director does not have a background in raising money, so grants and contributions until now have come without benefit of skilled fundraising efforts. The E.D. is currently receiving training on individual fundraising and grantwriting, and intends to seek more training in these areas.-The Board of Directors has not been actively involved in fundraising efforts. As an outcome of the training the E.D. is receiving, he will be training the board to participate efforts to raise donations from individuals. -The E.D. has implemented a web-based fundraising campaign using Network for Good and First Giving. -Individuals are raising funds for the organization through walking campaigns, stair-climbing campaigns, etc. -Interest in Fabry is growing. For instance, the organization's Facebook page has already amassed over 1000 "friends".-Three of the four largest contributors over the last five years have been pharmaceutical companies who are manufacturing or testing treatments for Fabry disease. While this will likely continue to be a significant source of support, the E.D. has identified several potential sources of smaller contributions, and will seek grants from those sources.In addition to plans and expectations to broaden the base of support, other facts & circumstances support the organization's continued status as a public charity:-The board of directors is comprised of individuals representative of the community: a private attorney, a nonprofit director, a government employee, a psychiatrist, a former association manager, and the organization's own Executive Director. Other than the E.D., none of the board members have any professional connection to Fabry Disease. Of the six members, only three have Fabry. -The organization's programs have purely charitable purposes serving a community that benefits greatly from the outreach, educational, and support work. See program service accomplishments at Form 990, Part III, Line 4.
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IRS990ScheduleI/Form990ScheduleIPartIII/TypeOfGrant0Travel expenses to attend camp
IRS990ScheduleI/Form990ScheduleIPartIV/Explanation0The foundation awards grants of travel expenses to individuals with Fabry Disease and their families, in order for them to attend the camp and conference that are held each year. The expenses of the grant funds are in most instances paid by the foundation directly to an airline in exchange for plane tickets for the camp and conference attendees. In some instances additional payments are made to the attendees to reimburse them for ancillary travel expenses.
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IRS990ScheduleO/GeneralExplanation/Explanation0The three most recent Form 990s (including financial information), the Bylaws, Articles of Incorporation, Form 1023 Application for Exemption, and Conflict of Interest Policy are provided to the public upon request.
IRS990ScheduleO/GeneralExplanation/Explanation1Prior to filing, the Form 990 will be reviewed by the Chairman and Treasurer, and then distributed to the full Board for review.
IRS990ScheduleO/GeneralExplanation/Identifier0Form 990, Part VI, Line 19
IRS990ScheduleO/GeneralExplanation/Identifier1Form 990, Part VI, Line 11
IRS990ScheduleO/GeneralExplanation/ReturnReference0Form 990, Part VI, Line 19: Other Organization Documents Publicly Available
IRS990ScheduleO/GeneralExplanation/ReturnReference1Form 990, Part VI, Line 11: Form 990 Review Process
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IRS990/TheBooksAreInCareOf/AddressUS/ZIPCode020008
IRS990/TheBooksAreInCareOf/NamePerson0Gerald Walter
IRS990/TheBooksAreInCareOf/TelephoneNumber08006519131
IRS990/TotalAssets/BOY040197
IRS990/TotalAssetsBOY040197
IRS990/TotalAssets/EOY039120
IRS990/TotalAssetsEOY039120
IRS990/TotalCompGT150K0false
IRS990/TotalContributions0245993
IRS990/TotalExpensesCurrentYear0246677
IRS990/TotalExpensesPriorYear0148373
IRS990/TotalFunctionalExpenses/Fundraising04667
IRS990/TotalFunctionalExpenses/ManagementAndGeneral013739
IRS990/TotalFunctionalExpenses/ProgramServices0228271
IRS990/TotalFunctionalExpenses/Total0246677
IRS990/TotalFundrsngExpCurrentYear04667
IRS990/TotalGrossUBI00
IRS990/TotalLiabilities/BOY00
IRS990/TotalLiabilities/EOY00
IRS990/TotalLiabilitiesEOY00
IRS990/TotalLiabNetAssetsFundBalances/BOY040197
IRS990/TotalLiabNetAssetsFundBalances/EOY039120
IRS990/TotalNbrEmployees01
IRS990/TotalNbrVolunteers025
IRS990/TotalNetAssetsFundBalances/BOY040197
IRS990/TotalNetAssetsFundBalances/EOY039120
IRS990/TotalOtherRevenue00
IRS990/TotalProfFundrsngExpCY00
IRS990/TotalProgramServiceExpense0228271
IRS990/TotalProgramServiceRevenue00
IRS990/TotalReportableCompFromOrg086491
IRS990/TotalRevenueCurrentYear0245600
IRS990/TotalRevenuePriorYear0151732
IRS990/TotalRevenue/RelatedOrExemptFunctionIncome0-393
IRS990/TotalRevenue/TotalRevenueColumn0245600
IRS990/TransactionRelatedEntity0false
IRS990/TransfersToExemptNonChrtblOrg0false
IRS990/TravelEntrtnmntPublicOfficials/Total00
IRS990/Travel/ManagementAndGeneral097
IRS990/Travel/ProgramServices03315
IRS990/Travel/Total03412
IRS990/TypeOfOrganizationCorporation0X
IRS990/UnrelatedBusinessIncome0false
IRS990/UnrestrictedNetAssets/BOY040197
IRS990/UnrestrictedNetAssets/EOY039120
IRS990/UponRequest0X
IRS990/WebSite0http://www.fabrydisease.org/
IRS990/WhistleblowerPolicy0false
IRS990/WrittenPolicyOrProcedure0false
IRS990/YearFormation02005
ReturnHeader/BuildTS02016-03-07 17:11:31Z
ReturnHeader/Filer/EIN0202944028

Document Assets

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Filings

Displayed year

2012 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$39,120
Liabilities
$0
Net assets
$39,120
Revenue
-
Expenses
$246,677
Net income
-
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.70$0.03$2.67$5.92$7.39$1.47
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.14$0.00$4.14$5.75$6.83$1.07
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.21$0.00$5.21$3.08$4.73$1.65
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.86$0.00$6.86$5.72$2.29$3.44
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.42$0.00$3.42$1.89$2.17$0.28
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.70$0.00$3.70$5.45$3.94$1.51
2019Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.19$0.00$2.19$3.94$4.34$0.40
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.59$0.00$2.59$5.08$3.84$1.24
2017Summary only. Only limited summary data is available for this year.$1.33$0.00$1.33$3.20$4.20$1.00
2016Summary only. Only limited summary data is available for this year.$2.33$0.00$2.33$4.70$3.89$0.81
2015Summary only. Only limited summary data is available for this year.$1.51$0.00$1.51$3.97$3.88$0.09
2014XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.42$0.00$1.42$4.15$3.08$1.07
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.35$0.00$0.35$3.16
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.39$0.00$0.39$2.47
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.40$0.00$0.40$1.52$1.48$0.03
2010XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.37$0.00$0.37$1.65$1.45$0.19