Alpha-1 Foundation (Miami, FL)


  • Name:Linda Rodriguez
  • Title:Development Administrator

Organization Address

  • Organization Name:Alpha-1 Foundation
  • Address:
    Miami, FL 33133
    United States

Organization Phone

  • Main phone:305-567-9888

User Email


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  • Mission:
  • The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency.

  • History:
  • The Alpha-1 Foundation is a not-for-profit, voluntary health organization founded a decade ago by Sandy Lindsey, Susan Stanley, and John Walsh, all diagnosed with Alpha-1. Regrettably, Ms. Stanley and Ms. Lindsey have passed away as a result of their illness, however their vision for this vital organization remains and is joined by thousands of others.

    At the time the Foundation was conceived, there was little research being conducted on Alpha-1, as is the case with many “orphan disorders.” The National Institutes of Health (NIH), National Heart, Lung and Blood Institute (NHLBI), had just concluded its 7-year longitudinal study on Alpha-1 and dropped funding at its 37 Alpha-1 registry clinical centers. There was no organized effort by the public or private sector to fund and promote research on Alpha-1 and there were huge obstacles to overcome in stimulating research initiatives.

    Today, the Foundation has successfully overcome all major impediments to pursuing improved treatments and a cure for Alpha-1. It has built the infrastructure necessary to significantly stimulate and advance research on this lethal genetic disorder and has created awareness of Alpha-1 within the National Institutes of Health (NIH) and the voluntary health sector.

  • Year established:1995
  • Endowment:Unknown


  • Executive / Trustee board size:6
  • Advisory board size:14
  • Staff size:17


  • Organization type:Grantseeker
  • Country of registration:United States
  • Tax Determination Letter:Received Determination Letter
  • IRS Section:501(c)(3)
  • IRS Subsection:None
  • Tax ID:65-0585415

Other Organization Web

IRS Business Master File Information

  • EIN:650585415
  • Organization Name:ALPHA-1 FOUNDATION INC
  • Sort (Secondary) Name:ALPHANET
  • Care Of Name:% MONICA W EXT 247
  • Organization Address:2937 SW 27TH AVE STE 302
  • Organization City:MIAMI
  • Organization State:FL
  • Organization Zip:33133-3772
  • Group Exemption Number:0000
  • Subsection Code:03
  • Classification Code(s):2
  • Subsection/Classification Desc.:Educational Organization
  • Affiliation Code:3
  • Ruling Date:March, 1996
  • Deductibility Code:1
  • Foundation Code:15
  • Foundation Code Desc.:Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi)
  • Activity Code(s):994, 179
  • Activity Code Desc.(s):Described in section 170(b)1)(a)(vi) of the Code, Other health services
  • Organization Code:1 (Corporation)
  • Exempt Org. Status Code:01 (Unconditional Exemption)
  • Tax Period:June, 2016
  • Filing Requirement Category:01 (990 (all other) or 990EZ return)
  • Accounting Period:June
  • NTEE Code:E70
  • Asset Amount:$0
  • Asset Code:8 ($10,000,000 - $49,999,999)
  • Income Amount:$0
  • Income Code:8 ($10,000,000 - $49,999,999)
  • 990 Revenue Amount:$0
  • Last Updated:3/17/2018 1:25:00 pm

This information is directly from the IRS Exempt Organization Business Master File at Exempt Organizations Business Master File Extract. This information is not under the control of the Common Grant Application and is collected and compiled and can only be changed by the IRS.