NATIONAL FABRY DISEASE FOUNDATION

Address
4301 CONNECTICUT AVE NW STE 404
WASHINGTON, DC 20008-2369
Contact
Website: http://www.fabrydisease.org/
Phone: +1 (800) 651-9131
Nonprofit
NTEE: E70 - Public Health Program (Includes General Health and Wellness Promotion
EIN: 20-2944028

Mission

Ensure that all individuals with Fabry Disease are identified, diagnosed and treated in time to avoid a diminished quality of life and life threatening consequences; to provide assistance to individuals with the disease and their families; to provide education and awarenesss; and to promote research to improve treatment.
 201520142013
Basic features of the organization
Year of formation2005
Subsection501(c)(3)
Organization typeCorporation
Metropolitan statistical area8872
Human resources, including compensation
Summary compensation info
Total compensation of current key personnel $104,000.00$104,000.00
Sum of reportable (W2/1099) compensation $104,000.00$104,000.00
Number of employees 21
Number of people compensated >$100k 11
Number of volunteers 3035
Number of highly compensated contractors 0 
Personnel
Brown, Sue
Title  Treasurer
Name of key/compensated person  Sue Brown
Average hours per week working for org  0.50
Reportable compensation from org  $0.00
Other comp, non-reportable, from org and related orgs  $0.00
Position  Individual trustee or director, Officer
Corresponding comp from related orgs
Reportable compensation from related orgs   $0.00
Average hours per week working for related orgs  0.00
Gaffin, Elizabeth
Title SecretarySecretary
Name of key/compensated person Elizabeth GaffinElizabeth Gaffin
Average hours per week working for org 0.500.50
Reportable compensation from org $0.00$0.00
Other comp, non-reportable, from org and related orgs $0.00$0.00
Position Individual trustee or director, OfficerIndividual trustee or director, Officer
Corresponding comp from related orgs
Reportable compensation from related orgs  $0.00$0.00
Average hours per week working for related orgs 0.000.00
Halberg, Derek
Title ViceChair/TreasVice-Chair
Name of key/compensated person Derek HalbergDerek Halberg
Average hours per week working for org 0.500.50
Reportable compensation from org $0.00$0.00
Other comp, non-reportable, from org and related orgs $0.00$0.00
Position Individual trustee or director, OfficerIndividual trustee or director, Officer
Corresponding comp from related orgs
Reportable compensation from related orgs  $0.00$0.00
Average hours per week working for related orgs 0.000.00
Krasnow, Tracey
Title DirectorDirector
Name of key/compensated person Tracey KrasnowTracey Krasnow
Average hours per week working for org 0.500.50
Reportable compensation from org $0.00$0.00
Other comp, non-reportable, from org and related orgs $0.00$0.00
Position Individual trustee or directorIndividual trustee or director
Corresponding comp from related orgs
Reportable compensation from related orgs  $0.00$0.00
Average hours per week working for related orgs 0.000.00
Walter, Gerald
Title ChairmanChairman
Name of key/compensated person Gerald WalterGerald Walter
Average hours per week working for org 40.0040.00
Reportable compensation from org $104,000.00$104,000.00
Other comp, non-reportable, from org and related orgs $0.00$0.00
Position Individual trustee or director, OfficerIndividual trustee or director, Officer
Corresponding comp from related orgs
Reportable compensation from related orgs  $0.00$0.00
Average hours per week working for related orgs 0.000.00
Warnock, Douglas
Title DirectorDirector
Name of key/compensated person Douglas WarnockDouglas Warnock
Average hours per week working for org 0.500.50
Reportable compensation from org $0.00$0.00
Other comp, non-reportable, from org and related orgs $0.00$0.00
Position Individual trustee or directorIndividual trustee or director
Corresponding comp from related orgs
Reportable compensation from related orgs  $0.00$0.00
Average hours per week working for related orgs 0.000.00
Purpose: mission, activities & accomplishments
Mission or significant activities To ensure that all individuals with Fabry Disease are identified, diagnosed and treated in time to avoid a diminished quality of life and life threatening consequences; to provide education and awarenesss; and to promote research to improve treatment for Fabry Disease.To ensure that all individuals with Fabry Disease are identified, diagnosed and treated in time to avoid a diminished quality of life and life threatening consequences; to provide education and awarenesss; and to promote research to improve treatment for Fabry Disease.
Program expenses (total) $292,436.00$298,589.00
Programs, including revenue & expenses
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 33 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. We provide financial assistance for one-time or short term needs not covered by other programs.
Program expenses $136,510.00$119,421.00
Grants and allocations made $59,359.00$54,435.00
Program description 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 33 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. We provide financial assistance for one-time or short term needs not covered by other programs.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. We provide financial assistance for one-time or short term needs not covered by other programs.
Education 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 1,600 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.
Program expenses $155,926.00$179,168.00
Grants and allocations made $24,603.00$27,217.00
Program description Education 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 1,600 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.Education 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.
Financial data
Expense categories (totals)
Sum (total functional expenses) $307,831.00$315,643.00
Program services (total functional expenses) $292,436.00$298,589.00
Management & general (total functional expenses) $12,232.00$12,827.00
Fundraising (total functional expenses) $3,163.00$4,227.00
Revenue
Total revenue $414,863.00$311,637.00
Program service revenue (total)$0.00$0.00$0.00
Revenue from contributions (total)$396,935.00$414,863.00$311,637.00
Investment income $0.00$0.00
Total unrelated business revenue $0.00$0.00
Other revenue, current yr $0.00$0.00
Total revenue from grants, etc., current yr $414,863.00$311,637.00
Gross receipts $414,863.00$311,637.00
Sources of contributions
Revenue from all other contributions $414,863.00$311,637.00
Other types of revenue
Royalties (total) $0.00$0.00
Miscellaneous revenue (total) $0.00$0.00
Net revenue from gaming (total) $0.00$0.00
Income from dividends, interest, and similar investments $0.00$0.00
Net rental income$0.00$0.00$0.00
Net income from fundraising events $0.00$0.00
Net inventory sales (total) $0.00$0.00
Fees for services
Lobbying fees (total) $0.00$0.00
Legal fees (total) $0.00$0.00
Fundraising service fees (total) $0.00$0.00
General management fees (total) $0.00$0.00
Investment management fees (total) $0.00$0.00
Accounting service fees (total) $1,946.00$4,626.00
Assets and liabilities
Total assets$151,453.00$142,146.00$35,114.00
Total assets, beginning of year $35,114.00$39,120.00
Total liabilities$0.00$0.00$0.00
Pledges & accounts receivable, net $0.00$0.00
Loans & receivables from key persons $0.00$0.00
Temporarily restricted net assets $80,000.00 
Net assets $142,146.00$35,114.00
Net assets, beginning of year $35,114.00$39,120.00
Intangible assets $2,927.00$6,309.00
Other assets $0.00$0.00
Investments: other securities $0.00$0.00
Investments: publicly traded securities $0.00$0.00
Cash: non-interest bearing $138,974.00$28,438.00
Cash: non-interest bearing, beginning of year $28,438.00$28,811.00
Investments: program-related $0.00$0.00
Inventories for sale or use $0.00$0.00
Other financial variables
Revenue less expenses $107,032.00-$4,006.00
Advertising (total) $98.00$10.00
Savings & temp cash investment $0.00$0.00
Accounts receivable, net $0.00$0.00
Prepaid expenses & deferred charges $0.00$0.00
Total net assets or fund balances $142,146.00$35,114.00
Depreciation, depletion, amortization $3,505.00$3,634.00
Payment to affiliates $0.00$0.00
Governance and accountability
Number of voting members 55
Number of independent voting members 44
Tax year start date 2013-06-012012-06-01
Tax year end date 2014-05-312013-05-31
Accounting method OtherOther
Metadata about the filing
E-return type 990990
Date e-filing submitted 2015-05-142014-06-18
IRS schema version 2013v4.02012v2.0
Filing identifier 201530909349300793201411019349300316
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