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Health : Diseases, Disorders, and Disciplines

Alpha-1 Foundation

Giving hope to people living with Alpha-1 around the world

four stars

93.26

3300 Ponce de Leon Boulevard Coral Gables, FL 33134
tel: (877) 228-7321   Web Site
EIN: 65-0585415

Board Leadership
Jeanine D'Armiento, M.D.
Chair

CEO
Miriam O'Day
President & CEO

  Score
(out of 100)
Rating
Overall Score & Rating 93.26 four stars
  Financial 91.36 four stars
  Accountability & Transparency 96.00 four stars
This rating was published 07/01/2019 and includes data from FY2018, the most recent 990 received at that time.

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. Alpha-1 Antitrypsin (Alpha-1) Deficiency is a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children and adults. The Foundation has realized continuous growth since its inception in 1995 and has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. The Foundation has invested more than $76 million to support Alpha-1 Antitrypsin research and programs in 112 institutions in North America, Europe, the Middle East and Australia.

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. Alpha-1 Antitrypsin (Alpha-1) Deficiency is a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children and adults. The Foundation has realized continuous growth since its inception in 1995 and has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. The Foundation has invested more than $76 million to support Alpha-1 Antitrypsin research and programs in 112 institutions in North America, Europe, the Middle East and Australia.

Impact Information

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Reported Results
Showing 3 of 13
Total in 2018
Average number of dollars given by new donors
197
Number of overall donors
3,881
Number of community events or trainings held and attendance
5,000
Number of conference attendees
683
Number of clients served
7,000
Number of unique website visitors
549,810
Number of clients participating in educational programs
1,342
Number of new donors
2,037
Average online donation
105
Average number of dollars received per donor
150
Number of Facebook followers
12,218
Number of new website visitors
386,526
Number of website pageviews
644,190
This impact information is current as of January 2020, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Financial

four stars

91.36

Accountability & Transparency

four stars

96.00

This rating was published 07/01/2019 and includes data from FY2018, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
81.6%
  Administrative Expenses 9.5%
  Fundraising Expenses 8.8%
  Fundraising Efficiency $0.09
  Working Capital Ratio (years) 2.69
  Program Expenses Growth 1.3%
  Liabilities to Assets 7.5%
All data for Financial Performance Metrics calculations was provided by Alpha-1 Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Alpha-1 Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Alpha-1 Foundation (FL) 93.26 four stars
The Cornelia de Lange Syndrome Foundation (CT) 92.38 four stars
Spina Bifida Association (VA) 85.88 three stars
National Fragile X Foundation (DC) 94.84 four stars
Cerebral Palsy Foundation (NY) 89.25 three stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $7,665,879
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $0
   Related Organizations $0
   Government Grants $3,835
Total Contributions $7,669,714
   Program Service Revenue $532,773
Total Primary Revenue $8,202,487
   Other Revenue $2,429,442
TOTAL REVENUE $10,631,929
   
EXPENSES  
   Program Expenses $7,353,784
   Administrative Expenses $981,696
   Fundraising Expenses $867,507
TOTAL FUNCTIONAL EXPENSES $9,202,987
   
Payments to Affiliates $0
Excess (or Deficit) for the year $1,428,942
   
Net Assets $25,603,799

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research Network $3,792,907 51.6%
Alpha-1 Registry And ACT Trial $730,323 9.9%
National Conference $584,949 8.0%

Ratings History
Alpha-1 Foundation has received 9 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-06 07/01/2019 93.26 four stars
2017-06 08/01/2018 97.13 four stars
2016-06 06/01/2017 94.31 four stars
2015-06 07/01/2016 94.30 four stars
2014-06 06/01/2016 91.86 four stars
 
CN 2.0
2014-06 10/01/2015 90.24 four stars
2013-06 08/01/2014 92.71 four stars
2012-06 08/01/2013 92.15 four stars
2011-06 06/01/2012 91.33 four stars
2009-06 09/20/2011 93.75 four stars
 
CN 1.0
2009-06 11/24/2010 88.84 three stars
2008-06 05/01/2009 77.04 two stars
2007-06 02/01/2008 88.37 three stars
2006-06 02/01/2007 77.11 two stars
2005-06 05/01/2006 83.52 three stars
2004-06 09/01/2005 91.96 four stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 65-0585415
Name in IRS Master File ALPHA-1 FOUNDATION INC
NTEE Code E70
NTEE Classification Public Health Program (Includes General Health and Wellness Promotion
NTEE Type Health - General and Rehabilitative
Classification Educational Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (994) Described in section 170(b)1)(a)(vi) of the Code
(179) Other health services
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date March, 1996
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End June
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • June, 2018
  • June, 2017
  • June, 2016
  • June, 2015
  • June, 2014
Compensation % of Expenses Paid to Title
$303,453 3.29% Henry R. Moehring President, CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
Alpha-1 Foundation (FL) 93.26 four stars
Fanconi Anemia Research Fund (OR) 93.21 four stars
The Progeria Research Foundation (MA) 91.57 four stars
The Cornelia de Lange Syndrome Foundation (CT) 92.38 four stars
United Ability (AL) 95.72 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Alpha-1 Foundation
3300 Ponce de Leon Boulevard
Coral Gables, FL 33134
tel: (877) 228-7321
fax: (305) 567-1317
EIN: 65-0585415

Visit Web Site

Board Leadership

Jeanine D'Armiento, M.D.
Chair

CEO

Miriam O'Day
President & CEO

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