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Alpha-One Foundation, Inc. Organization Name provided in the GuideStar Exchange* as of 02/12/2014: Alpha-One Foundation, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: ALPHA-1 FOUNDATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  Alpha-1 Foundation
Coral Gables, FL

GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Alpha-One Foundation, Inc. Organization Name provided in the GuideStar Exchange* as of 02/12/2014: Alpha-One Foundation, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: ALPHA-1 FOUNDATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: Alpha-1 Foundation
Physical Address: Coral Gables, FL 33134 
EIN: 65-0585415
Web URL: www.alpha-1foundation.org 
NTEE Category: H Medical Research
H20 Birth Defects, Genetic Diseases Research
H Medical Research
H99 Other Medical Research N.E.C.
H Medical Research
H45 Lung
Ruling Year: 1996 


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Mission Statement

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.

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

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Annual Revenue & Expenses (IRS Form 990, July 2012)

Fiscal Year Starting: July 01, 2012
Fiscal Year Ending: June 30, 2013

Total Revenue $7,238,423
Total Expenses $5,367,939

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Leadership (GuideStar Exchange,
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February 2014)

Mr. John W. Walsh

Term:

Since Mar 1995

Profile:

Mr. Walsh is the co-founder, President and CEO of the Alpha-1 Foundation in Miami, FL. In 2002 Mr. Walsh's contribution to pioneering collaboration in orphan drug development was recognized by the FDA with the Commissioner's Special Citation. Mr. Walsh has an extensive background in busines management and government relations and regularly testifies before Congress and advisory groups as a patient advocate. Mr. Walsh serves on the following organizations: Member of the NIH Director's Council of Public Representatives Past Chairperson of the National Health Council's Board of Directors (2005-2006) Past Chairperson of the American Thoracic Society Public Advisory Roundtable (PAR) Presidential Appointee of the American Throacic Society's Board of Directors (2004-2005) Trustee on the Foundation of the American Thoracic Society (2006-2008) Completed his third term on the DHHS' Advisory Committee on Blood Safety and Availability (1997-2006) Member of the Advisory Board of the Center for Genetic Research Ethics And Law (CGREAL) at Case Western Reserve University Member of the US COPD Coalition Executive Committee Past Chairperson of the International COPD Coalition (2006-2008) Co-Founder and Member of the COPD Foundation Board of Directors and serves as President Mr. Walsh was diagnosed with the rare genetic disorder, Alpha-1 Antitrypsin Deficiency, in 1989.

Leadership Statement:

Dear Friends, We are closer than ever to improved treatments and a cure. We can make a difference for our families and future generations. Your financial support can enormously impact the ability of the Foundation to fund meaningful research. A significant investment in research is the most effective way to make progress toward improved treatments and a cure for Alpha-1. With the level of interest by the scientific community at an all-time high, the need for funds has never been stronger. All investments in Alpha-1 research will continue to build upon the positive momentum that has been created.  The need for the Alpha-1 Foundation to make funds available for innovative research projects is imperative. Many promising research projects are being under-funded by federal government sources, as the budget for the National Institutes of Health (NIH) has decreased for the first time in 40 years. In fact, many researchers who started projects years ago have had to abandon them due to lack of funds. The Alpha-1 Foundation is determined to see that this does not happen to promising Alpha-1 science. Your investment is vital to achieving the Foundation’s mission: to provide the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency.  John W. Walsh President & CEO

Board Chair (GuideStar Exchange,
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February 2014)

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Board Co-Chair (GuideStar Exchange,
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February 2014)

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Board of Directors (GuideStar Exchange,
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February 2014)

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Board Leadership Practices (GuideStar Exchange,
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February 2014)
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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in February 2014

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Programs

Program: (GuideStar Exchange,
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February 2014)

Budget:
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Category:
Population Served:

Program Description:

The Alpha-1 Foundation maintains core programs that drive its mission of providing the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1). The Foundation's leadership is comprised of an active volunteer structure of more than 100 individuals that serve on its Board of Directors, Medical and Scientific Advisory Committees and Working Groups who together oversee the Foundation's operations and its scientific, and research activities. The Alpha-1 Research Infrastructure provides support for a network of more than 150 Alpha-1 investigators worldwide. It is one of the Foundation's most valuable assets and includes an Alpha-1: Research Registry; DNA & Tissue Bank; Genetics Laboratory; three full-time academic and/or clinical research programs, and more than 50 Clinical Resource Centers. Foundation-organized scientific meetings, conferences, workshops and symposia are also important components of this infrastructure. The Alpha-1 Grants and Awards Program is the heart of the Foundation's research activities. Its scientifically rigorous peer-reviewed process provides the framework to evaluate and recommend meritorious research projects for funding within the scope of the Alpha-1 research agenda. The National Targeted Detection Program (NTDP) is dedicated to raising awareness of Alpha-1 and encouraging medical professionals to conduct targeted testing, while preserving the confidentiality and privacy of participants and their families. Awareness and educational outreach programs are targeted to reach the medical, scientific and Alpha-1 communities as well as the general public. The Foundation's Public Policy Program monitors and influences legislative and regulatory issues and makes public the Foundation's positions on such issues as research, new therapeutics, screening and detection, access to care, medical privacy, genetic discrimination, federal and state funding, blood product safety, education, and awareness. The Foundation is committed to close collaborations with medical experts, the National Institutes of Health, the US Food and Drug Administration, industry, the Alpha-1 community and other organizations to jointly resolve critical issues in the field of Alpha-1 research and treatment and to advance its public policy goals and other mission points. A complete descriptions of the Foundation's programs can be found at www.alphaone.org.

Program Long-Term Success:

This spring, through its Grants & Awards Program, the Foundation awarded $903,405 in peer-reviewed and matching grants and $1,028,624 in program grants, including the Alpha-1 Coded Testing (ACT) Study and the Alpha-1 DNA and Tissue Bank, for a total of over $1.9 million in grant monies awarded. The State of Florida awarded the Foundation its eighth year of funding for the Florida Screening, Detection & Education Program which has funded a wide variety of activities in Florida dedicated to educating healthcare providers and at risk individuals about the importance of appropriately diagnosing Alpha-1. Free genetic testing is offered to at-risk individuals who would like to be tested, and test kits are sent to the physicians who have implemented testing protocols in their practices. Since 2000, more than 14,000 Floridians have been tested and more than 1,650 individuals have been found to have at least one abnormal alpha-1 allele.

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Impact Summary from the Nonprofit

Great strides have been made by the Alpha-1 Foundation to advance its mission on all fronts. We celebrated the passage of the Genetic Information Nondiscrimination Ace and worked to ensure that pulmonary rehabilitation will be provided to Medicare beneficiaries by supporting legislation. We spearheaded the effort to amend the 1986 Air Carrier Access Act to allow approved portable oxygen concentrators to be used as carry-on items by all airlines. We awarded a total of over $1.9 million in grant monies in peer-reviewed, matching and program grants including the Alpha-1 Coded Testing (ACT) Study and the Alpha-1 DNA and Tissue Bank. We initiated our first multi-center clinical study, entitled, "Targeted Detection of Alpha-1 Antitrypsin Deficiency in Patients Referred for Pulmonary Function Testing." The Gordon L. Snider Critical Issues Workshop "Quantitative Chest Tomography in COPD Research," brought experts from around the world to assist the research community in its efforts to standardize the technique for research and ultimately provide the best care for patients suffering from this condition.   The Foundation is committed to focusing on the most productive areas of research and to fast-tracking the most promising research into viable therapies. This approach is the most effective means of achieving a more complete understanding of the factors leading to disease and to identifying the most viable therapeutic interventions. A major focus is being placed on the establishment of multi-year research initiatives to expand the Foundation's grant making capacity with the goal of funding all meritorious research projects and stimulating new avenues of research. With the continued investment of research dollars we will see Alpha-1 become a disease of the past.

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