Alpha-1 Foundation, Inc.
Alpha-1 Foundation, Inc.
EIN: 65-0585415
as of September 2023
as of September 18, 2023
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
1996
President & CEO
Mr. Scott Santarella
Main address
3300 Ponce de Leon Blvd.
Coral Gables, FL 33134 USA
EIN
65-0585415
Health
Diseases and conditions
Respiratory system diseases
Genetic conditions and birth defects
Population served
Adults
Families
NTEE code
Birth Defects, Genetic Diseases Research (H20)
Other Medical Research N.E.C. (H99)
Lung (H45)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Affiliations
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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.
Education
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.
Building Friends for a Cure
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.
Public Policy and Advocacy
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.
Alpha-1 Global
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.
Patient Support Network
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.
National Education Series
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.
National Conference
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.
Genetic Counseling Program
The Alpha-1 Genetic Counseling Program provides free telephone-based genetic counseling for patients, family members, and healthcare professionals.
Alpha-1 Research Registry
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.
Family Testing / Testing Days
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.
Alpha-1 Coded Testing (ACT) Study
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.
Clinical Resource Centers
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.
Meetings, Conferences and Events
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.
Grants and Awards Program
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.
Where we work
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
External reviews
Photos
Videos
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2022 info
13.31
Months of cash in 2022 info
23.4
Fringe rate in 2022 info
24%
Funding sources info
Assets & liabilities info
Financial data
Alpha-1 Foundation, Inc.
Balance sheetFiscal Year: Jul 01 - Jun 30
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jul 01 - Jun 30
This snapshot of Alpha-1 Foundation, Inc.’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
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Business model indicators
| Profitability info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $1,605,979 | $2,896,270 | -$3,399,745 | $6,850,941 | $464,358 |
| As % of expenses | 17.6% | 30.8% | -46.0% | 109.8% | 7.3% |
| Unrestricted surplus (deficit) after depreciation | $1,545,100 | $2,862,713 | -$3,419,638 | $6,835,361 | $455,592 |
| As % of expenses | 16.8% | 30.3% | -46.1% | 109.3% | 7.2% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $10,631,929 | $10,626,839 | $11,171,403 | $10,942,439 | $10,890,084 |
| Total revenue, % change over prior year | -1.9% | 0.0% | 5.1% | -2.0% | -0.5% |
| Program services revenue | 5.0% | 6.1% | 5.0% | 2.2% | 3.4% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 4.5% | 4.7% | 4.5% | 4.2% | 4.3% |
| Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 74.0% | 80.1% | 68.2% | 73.0% | 83.1% |
| Other revenue | 16.4% | 9.1% | 22.2% | 20.6% | 9.2% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $9,142,108 | $9,405,642 | $7,391,017 | $6,240,523 | $6,355,440 |
| Total expenses, % change over prior year | -5.7% | 2.9% | -21.4% | -15.6% | 1.8% |
| Personnel | 27.8% | 22.0% | 23.0% | 27.8% | 26.6% |
| Professional fees | 8.3% | 8.6% | 6.0% | 9.9% | 14.4% |
| Occupancy | 2.4% | 2.4% | 2.7% | 3.4% | 3.5% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 42.3% | 46.3% | 49.6% | 46.7% | 40.6% |
| All other expenses | 19.1% | 20.8% | 18.7% | 12.2% | 14.9% |
| Full cost components (estimated) info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $9,202,987 | $9,439,199 | $7,410,910 | $6,256,103 | $6,364,206 |
| One month of savings | $761,842 | $783,804 | $615,918 | $520,044 | $529,620 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $9,964,829 | $10,223,003 | $8,026,828 | $6,776,147 | $6,893,826 |
Capital structure indicators
| Liquidity info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Months of cash | 0.8 | 2.4 | 4.7 | 16.6 | 23.4 |
| Months of cash and investments | 33.2 | 36.9 | 40.4 | 64.5 | 65.4 |
| Months of estimated liquid unrestricted net assets | 29.9 | 32.7 | 36.1 | 55.9 | 55.8 |
| Balance sheet composition info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Cash | $628,449 | $1,878,690 | $2,884,656 | $8,614,083 | $12,377,362 |
| Investments | $24,700,446 | $27,018,207 | $21,997,704 | $24,938,071 | $22,238,654 |
| Receivables | $2,131,522 | $1,691,598 | $2,079,860 | $982,721 | $675,118 |
| Gross land, buildings, equipment (LBE) | $393,504 | $400,861 | $426,267 | $414,904 | $414,903 |
| Accumulated depreciation (as a % of LBE) | 82.4% | 89.2% | 94.3% | 94.8% | 96.9% |
| Liabilities (as a % of assets) | 7.5% | 8.3% | 8.0% | 6.8% | 7.4% |
| Unrestricted net assets | $22,835,856 | $25,698,569 | $22,278,931 | $29,114,292 | $29,569,884 |
| Temporarily restricted net assets | $2,767,943 | $2,460,476 | N/A | N/A | N/A |
| Permanently restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Total restricted net assets | $2,767,943 | $2,460,476 | $2,594,640 | $3,121,522 | $3,303,012 |
| Total net assets | $25,603,799 | $28,159,045 | $24,873,571 | $32,235,814 | $32,872,896 |
Key data checks
| Key data checks info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Material data errors | No | Yes | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President & CEO
Mr. Scott Santarella
Number of employees
Source: IRS Form 990
Alpha-1 Foundation, Inc.
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
Alpha-1 Foundation, Inc.
Highest paid employeesSOURCE: IRS Form 990
Compensation data
Alpha-1 Foundation, Inc.
Board of directorsas of 09/21/2022
Board of directors data
Mr. Jon Hagstrom
Jeanine M D'Armiento, MD, PhD
Columbia University School of Medicine
Martin R Zamora, MD
University of Colorado, Denver
Elizabeth Johnson
James K Stoller, MD, MS (Org.Dev.)
Cleveland Clinic
Noel Gerard McElvaney, MD
Royal College of Surgeons, Ireland
Ann Knebel, PhD, RN
Fred Walsh
Peg Iverson
Faron Schonfeld
Kenneth A. Irvine
Catherine Vernon
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Contractors
Fiscal year endingGuideStar Pro Reports
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- Letter of Determination
- Officer and/or Employee data for 2022, 2021, 2020, 2019, 2018
- Contractor and/or Paid Preparer data for 2022, 2021, 2020
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