Alpha-1 Foundation, Inc.

aka Alpha-1 Foundation   |   Coral Gables, FL   |  http://www.alpha1.org

Mission

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.

Ruling year info

1996

President & CEO

Mr. Scott Santarella

Main address

3300 Ponce de Leon Blvd.

Coral Gables, FL 33134 USA

Show more contact info

EIN

65-0585415

NTEE code info

Birth Defects, Genetic Diseases Research (H20)

Other Medical Research N.E.C. (H99)

Lung (H45)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Alphas worldwide experience many of the same problems; little to no education or awareness of their condition; long delays in getting the correct diagnosis, all the while experiencing deteriorating health; inadequate clinical care by physicians unfamiliar with the standard of care for lung and liver disease caused by Alpha-1; and, in many cases, limited or no access to therapy. Finding better therapies and a cure is the main focus of the Foundation.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

E-Education Library

For Alphas, learning as much as they can about their diagnosis is the first step towards empowerment. The E-Education library is an exceptional tool to help accomplish just that. It is comprised of a variety of educational presentations given by Alpha-1 specialists on a range of different topics.

Population(s) Served
Adults

Educational materials on Alpha-1 provide validated medical information for physicians, medical professionals, individuals being tested for Alpha-1 and for all individuals and their families living with Alpha-1. The materials are widely disseminated by the Foundation upon request, at patient and professional meetings, at all awareness and detection activities and via the AlphaNet On-Demand system. Educational information is a vital lifeline to individuals diagnosed with Alpha-1 Antitrypsin Deficiency and it is our goal to provide resources to help Alphas and their families lead a more positive and healthy life.

Population(s) Served
Adults

Building Friends for a Cure (BFC) is an Alpha-1 Foundation program that is designed to broaden the reach of the Foundation and promote stronger links between the organization and the community. It provides the platform in which members of the Alpha community can help the Foundation work towards the goal of finding a cure. These events promote interaction among the community, with the Foundation, industry and medical professionals, including Clinical Resource Center physicians and staff.

Population(s) Served
Adults

The Alpha-1 Foundation is fighting for critical Alpha-1 research, advocating for our community and promoting access to care and support at the state and federal level. We work diligently to make Alpha-1 a national priority by speaking out about the needs and rights of people with Alpha-1 and their families. The Foundation is addressing the challenges that face our community ranging from diagnosis, treatment, research, cost of care, access to specialists, ensuring reimbursement and more. The Foundation's Public Policy Program advocates on behalf of the Alpha-1 community by monitoring and influencing legislative and regulatory issues. Of primary concern is the stimulation of medical research, the development of new therapies, screening and detection, access to care and treatment, federal and state funding, blood product safety, education, awareness and the recognition of the special needs of individuals with Alpha-1. These are just some of the ways in which the Foundation impacts the lives of countless Alphas and their families—and some of the reasons why we are such a respected voice in the public policy arena.

Population(s) Served
Adults
Children and youth
Health

The mission of Alpha-1 Global is to build and maintain a collaborative global network of Alpha-1 organizations and patients to increase awareness, detection, and access to care around the world.

Population(s) Served
Adults

The Patient Support Network is comprised of approximately 80 affiliated Support Groups throughout the country, various Virtual Support Groups and support resources provided through our national Patient Information Line and Peer Guide referrals. These support services are diverse and provide the greatest reach in order to best assist the Alpha-1 Community.

Population(s) Served
Adults
Families

The Alpha-1 National Education Series is comprised of six one-day patient educational programs which provide access to current medical information and resources for Alphas, their families and caregivers. A patient event is held in conjunction with each day to provide Alphas and their families an additional opportunity to interact and connect with each other.

Population(s) Served
Adults
Children and youth
Family relationships

The Alpha-1 National Education Conference is the largest gathering of Alphas and their families in the country. This Conference provides an arena for Alphas to network with each other, become motivated to take charge of their health, sign up for a local Support Group, take part in awareness and outreach activities, participate in a fundraiser or get involved in advocacy.

Population(s) Served
Adults

The Alpha-1 Genetic Counseling Program provides free telephone-based genetic counseling for patients, family members, and healthcare professionals.

Population(s) Served
Adults

The Alpha-1 Research Registry is a confidential database of diagnosed Alphas and carriers willing to participate in research studies and clinical trials for new therapies. The Alpha-1 Research Registry will continue to expand with the increased identification of the community. Participation in the registry is promoted at all patient meetings and educational conferences, as well as on the Foundation’s website and through the Clinical Resource Center (CRC) network.

Population(s) Served
Adults
Families

The Alpha-1 Foundation Detection Program is dedicated to raising awareness 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. As a result, our detection efforts are finding and helping affected families around the world.

Population(s) Served
Adults
Families

The Alpha-1 Coded Testing (ACT) Study is an ongoing study conducted at the University of Florida to investigate issues surrounding genetic testing, disease specific risks, and co-morbidities for Alpha-1 Antitrypsin Deficiency.

Population(s) Served
Adults

The program was established with the goal to have centers with special interest in Alpha-1 to foster Alpha-1 research and to provide the Alpha-1 community with information and physicians who offer specialized care.

Population(s) Served
Adults

The meetings and conferences organized by the Alpha-1 Foundation spark interest in Alpha-1, identify new avenues to explore, suggest potentially productive links between Alpha-1 and other diseases and establish the Foundation’s credibility as a resource for serious research.

Population(s) Served
Adults

The Alpha-1 Foundation is the international leader in the battle against Alpha-1 Antitrypsin Deficiency (Alpha-1). As the largest not-for-profit funder of Alpha-1 research, the Foundation is at the forefront of the scientific field, globally connecting researchers in the quest to find methods of treatment, detection and a cure, as well as fueling grants that embody cutting-edge progress. The Foundation has invested over $81 million to support Alpha-1 research and programs at more than 114 institutions in North America, Europe, the Middle East and Australia. Visionary donors, like you, are making it possible for the Foundation and its partners to leap forward in research and the treatment of Alpha-1.

Population(s) Served
Adults

Where we work

Accreditations

Association of Fundraising Professionals 2022

Better Business Bureau Wise Giving Alliance 2022

Charity Navigator 2022

National Health Council 2022

Affiliations & memberships

American Association for Respiratory Care 2022

Association of Fundraising Professionals - Member 2022

Better Business Bureau Wise Giving Alliance - Organization 2022

Board Source 2022

Combined Federal Campaign 2022

National Organization for Rare Disorders - Member 2022

United Way Member Agency 2022

National Health Council 2022

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Average number of dollars given by new donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Number of overall donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

2020/2021 was during part of the pandemic and in-person events were placed on hold.

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Related Program

Patient Support Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This is a total of individuals that attend our support group meetings.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Related Program

National Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This is the total number of attendees to our National Conference held once a year. The 2021 conference was held virtually for the second time ever.

Number of clients served

This metric is no longer tracked.
Totals By Year
Related Program

Patient Support Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This is the total number of individuals served through support groups, genetic counseling, informational calls, etc.

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of clients participating in educational programs

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This is the total number of attendees to our six education days and one national conference per year. 2021 was the first time that the national conference and all education days were held virtually.

Number of new donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

2020/2021 was during part of the pandemic and in-person events were placed on hold.

Average online donation

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

2020 was during part of the pandemic and in-person events were placed on hold.

Average number of dollars received per donor

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

2020 was during part of the pandemic and in-person events were placed on hold.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Alpha-1 Foundation maintains essential programs that drive its mission of finding a cure for Alpha-1 Antitrypsin Deficiency and improving the lives of people affected by Alpha-1 worldwide. Through dedication to this mission, the Foundation has fostered an informed, educated and cohesive community of patients, caregivers, families and healthcare professionals. The strength and support of our community, volunteers, researchers, clinicians and corporate partners enables the Alpha-1 Foundation to continually push the boundaries of detection, research, advocacy, learning and support to make a profound difference in the lives of Alphas across the nation and all over the world.

The Foundation continues to expand its reach throughout the world with a diverse membership of research institutions, biotechnology and pharmaceutical organizations, medical professional organizations and Alphas. Through these strong collaborations, the Foundation continually looks for new ways to serve Alphas and the community. This year we have been able to connect with more Alphas across the globe, increasing our reach worldwide. Our shared commitment to tackling challenges together has been a unifying force and a catalyst for community triumphs. From innovation and new initiatives, to securing impact from medical research, the Alpha-1 Foundation has lived up to its reputation as a leading organization over the past year. Through enriching existing programs, and establishing new initiatives, we have continued to aim high and achieve much for the Alpha-1 community. The Alpha-1 Foundation continues to maintain as well as enhance and grow those critical programs that drive its mission of finding a cure for Alpha-1 Antitrypsin Deficiency and improving the lives of people affected by Alpha-1 worldwide.

In order to enrich advancements and successes in these areas, the Foundation has continued to implement a Strategic Focus to define our strategies, ensuring proper decision making and allocation of resources. The roadmap to realizing success articulates that our financial resources, coupled with the support of employees and organization, is the groundwork that enables the Foundation to deliver the programs that bring value to our stakeholders; i.e. Alphas and their families, scientists and physicians, industry and government. It is a continually evolving plan that requires input from everyone in the Alpha community. This input allows the Foundation to continue to raise the bar; enhancing current programs and pursuing new initiatives.

The Alpha-1 Foundation has invested nearly $90 million to support Alpha-1 Antitrypsin Deficiency research and programs at 123 institutions in North America, Europe, the Middle East, and Australia. Foundation-sponsored research has had a significant impact on our understanding of the mechanisms underlying the clinical manifestations of Alpha-1 and has identified novel drug targets likely to lead to new therapeutic solutions. The Foundation continues to work collaboratively with biotech and pharmaceutical industries as well as government regulators to promote the fastest possible development and regulatory approval of new therapies. This would not be possible without the many academic investigators whose discoveries have brought the field to this critical juncture. To further this strategy, the Foundation has established a new award in translational research named The John W. Walsh Translational Research Award honoring the late John Walsh’s desire to find a cure within the foreseeable future. He reminded us over and over again that the Foundation’s task is to “find a cure and go out of business.” While not there yet, our peer-reviewed research program has created a solid knowledge base for translational research projects that have the promise to positively impact the health of Alphas and steer innovative research out of the lab and into practice faster than ever. While this process has progressed farther in Alpha-1 liver disease, new discoveries for lung disease are also on the horizon.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve individuals diagnosed with Alpha-1 Antitrypsin Deficiency, their family members and caregivers. We also provide education tools to the general public and medical and scientific communities.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We consistently change education topics at patient events due to the needs expressed via surveys and reviews. We have transitioned many live, in person events to virtual events.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    We have made our patients the center of all decisions. We make it a point to include the patient voice and perspective in all areas of our programs and advisory committees.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Alpha-1 Foundation, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Alpha-1 Foundation, Inc.

Board of directors
as of 5/17/2022
SOURCE: Self-reported by organization
Board chair

Dr. Jeanine D'Armiento

Columbia University School of Medicine

Term: 2020 - 2022

Jeanine D'Armiento, MD, PhD

Columbia University School of Medicine

Martin Zamora, MD

University of Colorado, Denver

Elizabeth Johnson

Jennifer Jopp

James Stoller, MD, MS (Org.Dev.)

Cleveland Clinic

Noel McElvaney, MD

Royal College of Surgeons, Ireland

Frank Willersinn, MD

Ann Knebel, PhD, RN

Fred Walsh

Peg Iverson

Faron Schonfeld

Kenneth Irvine

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/17/2022,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 04/01/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.