2022-03-04T09:58:42-06:00 2021-06-30 990 2020-07-01 650585415 Alpha-1 Foundation Alpha One Foundation % Mark Delvaux ALPH 3055679888 3300 Ponce de Leon Boulevard Miami FL 331347211 MARK DELVAUX Vice President CFO 3054421776 2022-03-04 false MARK DELVAUX 999009999 PATRICK M LUNN P01874332 3054421776 2022-03-04 X 0 IAL1 2020 2022-09-23 18:48:47Z Alpha One Foundation MARK B DELVAUX 3300 Ponce de Leon Boulevard Coral Gables FL 33134 16076762 false X www.alpha1.org X 1995 FL The Alpha1 Foundation is committed to finding a cure for Alpha1 Antitrypsin Deficiency and to improving the lives of Alphas worldwide 12 12 19 300 240000 62038 7621556 7939893 561000 240000 2917916 2701074 70931 61472 11171403 10942439 3663209 2915188 0 1701046 1734769 0 550275 2046655 1606146 7410910 6256103 3760493 4686336 27046714 34603486 2173143 2367672 24873571 32235814 X 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. false false 3083689 2570963 558543 Alpha-1 Research Network: The Alpha-1 research infrastructure provides support for a network of Alpha-1 investigators worldwide. It is one of the Foundation's most valuable assets and includes the DNA & Tissue Bank, Genetics Laboratory, and Clinical Resource Centers. The Foundation's mission is served by scientific meetings that bring together stakeholders with the intent to promote scientific discovery, identify new approaches to the detection of Alpha-1, and educate physicians and patients on Alpha-1. The Alpha-1 Grants and Awards Program is the heart of the Foundation's research activities and has established itself as the worldwide leader of Alpha-1 research support. 235825 674000 Alpha-1 National Conference: The 30th annual Alpha-1 National Educational Conference was held virtually on June 10-12, 2021. The speakers included some of the leading clinicians and researchers in the field of Alpha-1 to bring incredible subject matter expertise and education to the community. The program covered a wide range of medical education and supportive topics to inform, empower and motivate patients to take charge of their health. The last five years of presentations are available on the Foundation's website at www.alpha1.org. 584050 300225 135000 Alpha-1 Registry and ACT Study: The Research Registry is a confidential database of diagnosed Alphas and carriers willing and able to participate in research studies and clinical trials for new therapies. The Registry represents the largest cohort of Alphas in the world. The goal of the Alpha-1 Coded Testing (ACT) Study is to provide a way for those at risk, including family members of diagnosed Alphas, to learn their genotype. The study includes a research questionnaire, a finger-stick testing kit, and is free and confidential. The ACT Study has enrolled over 40,000 individuals since 2001. 167712 4000 210000 The mission of Alpha-1 Global is to develop a collaborative global network of Alpha-1 patient leaders, physicians, and researchers. 121164 230000 The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues. 174212 240000 The Alpha-1-To-One Magazine is designed to inform the community of research developments, education, advocacy and fund raising opportunities. 203844 295000 Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers. 507308 40000 366000 Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program. 1174240 44000 1341000 5077804 true true false true false true false false false false true false false false true true true false false false true true true false true false false true true true false false false false false false false false true false false false false true true true false false true 24 0 true 19 true true true false false false false true true false false false false false false false false false X 12 12 false false false false false false false true true false false true true true true true true true true false AL AR CA CT FL GA HI IL KS KY X X MARK B DELVAUX 3055679888 3300 Ponce de Leon Boulevard Coral Gables FL 33134 X MIRIAM A O'DAY President and CEO 40.00 X 276735 0 6968 RANDEL H PLANT Sen Dir Research Progs 40.00 X 121544 0 13213 ANGELA T MCBRIDE Sen Dir Corp Relations 40.00 X 108866 0 16573 SCOTT SANTARELLA President and CEO 40.00 X 0 0 0 MARK B DELVAUX Vice President and CFO 10.00 X 0 0 0 JEANINE M D'ARMIENTO Chair 8.000 X X 0 0 0 ELIZABETH JOHNSON Vice Chair 8.000 X X 0 0 0 FRED C WALSH Vice Chair 8.000 X X 0 0 0 JENNIFER JOPP Secretary 8.000 X X 0 0 0 JON HAGSTROM Treasurer 8.000 X X 0 0 0 MARTIN R ZAMORA Director 8.000 X X 0 0 0 KENNETH IRVINE Director 4.000 X 0 0 0 PEGGY IVERSON Director 4.000 X 0 0 0 ANN KNEBEL Director 4.000 X 0 0 0 NOEL G MCELVANEY Director 4.000 X 0 0 0 FARON SCHONFELD Director 4.000 X 0 0 0 JAMES K STOLLER Director 4.000 X 0 0 0 507145 36754 3 true true true AlphaNet Inc 3300 Ponce de Leon Boulevard Coral Gables FL FL 33134 Management services 185500 Original Impressions LLC PO Box 31792 Tampa FL 33631 Printing and publication 145071 2 7939893 210230 7939893 Publication income 511120 240000 240000 240000 460728 460728 8788 8788 8788 8788 7374669 5134323 2240346 2240346 2240346 52684 52684 10942439 2709862 240000 X 1809734 1809734 15000 15000 1090454 1090454 1415121 1066584 86955 261582 22499 16174 2199 4126 196215 160403 5088 30724 100934 74957 7529 18448 149680 149680 60708 16025 33822 10861 55840 55840 135874 135874 214323 162021 52302 330231 241561 17399 71271 109894 70192 20031 19671 210912 160256 12373 38283 -293 -166 -127 1473 1359 -236 350 15580 11838 914 2828 23367 15905 3662 3800 Telephones 21728 14867 668 6193 Dues and subscriptions 211492 150640 17263 43589 Licenses, fees, and taxes 59337 20788 38549 Bad debt expenses 6000 6000 6256103 5077804 628024 550275 1049020 4319457 1835636 4294626 2079860 982721 35014 21728 414904 393155 24346 21749 22023016 24801956 -25312 136115 25134 25134 27046714 34603486 1873780 1937857 284000 416000 15363 13815 2173143 2367672 X 22278931 29114292 2594640 3121522 24873571 32235814 27046714 34603486 X 4686336 2538609 135874 1424 X false true X true false X 9245514 7669714 8335339 7936556 7939893 41127016 9245514 7669714 8335339 7936556 7939893 41127016 29175981 11951035 471866 493565 507839 512763 469516 2455549 122780 104576 17767 73156 62038 380317 43962882 0.27184 0.28250 X The Foundation maintains an ongoing nationwide solicitation program from the general public, the Alpha-1 community, and public charities. Part II Line 17 The Alpha-1 Foundation maintains an ongoing solicitation program Part II Line 17 from the general public. During the fiscal year ended June 30, Part II Line 17 2021, the Foundation received contributions from 3,327 donors Part II Line 17 from across the United States. As shown on Schedule B, 43 donors Part II Line 17 contributed amounts of $5,000 or higher. Fund raising activities Part II Line 17 include a general campaign, special events, and other fund Part II Line 17 raising appeals. The public support percentage for fiscal 2021 Part II Line 17 would be 33.3% if the support received from AlphaNet, Inc., a Part II Line 17 Section 501(c)(3) Type 2 charity were excluded from this Part II Line 17 computation. The support received from AlphaNet has provided Part II Line 17 funding to support detection of Alpha-1 affected persons, Part II Line 17 research for improved therapies, and a cure for Alpha-1 Part II Line 17 antitrypsin deficiency. The Board of Directors is comprised of 12 Part II Line 17 individuals, geographically distributed across the United States Part II Line 17 and abroad, including 6 members who have been diagnosed with Part II Line 17 Alpha-1, 1 who had a family member diagnosed with Alpha-1, 1 Part II Line 17 registered nurse, and 4 medical doctors who are experts in the Part II Line 17 field. All directors are independent. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 10000 10000 6246103 6256103 462805 115701 false 517689 540927 451409 462805 1972830 2959245 10000 10000 10000 10000 40000 129422 135232 112852 115701 493207 739811 10000 10000 10000 10000 40000 false false false false false false false false false false false 1 28369 true true false false false false false 200825 200825 154020 134063 19957 60059 58267 1792 21749 The Alpha1 Project 136115 C 136115 Deposits 25134 25134 13815 13815 X 13481045 2538609 2538609 10942436 3 3 10942439 6120229 6120229 135874 135874 6256103 P10, Ln 2 The Foundation has adopted the provisions of ASC No.740 "Income Taxes." P10, Ln 2 Under ASC 740, the Foundation must recognize the tax liability (or benefit) P10, Ln 2 associated with tax positions taken for tax return purposes when it is P10, Ln 2 more-likely-than-not that the position will be sustained. The adoption of P10, Ln 2 ASC 740 had no impact on the Foundation's consolidated financial P10, Ln 2 statements. Management of the Foundation does not believe there are any P10, Ln 2 material uncertain tax positions and accordingly has not recorded any P10, Ln 2 liability for unrecognized tax benefits. true Europe Research 99000 Wire East Asia and the Pacific Research 99000 Wire Europe Research 71700 Wire Europe Research 181537 Wire Europe Research 157750 Wire Europe Research 99000 Wire Middle East and North Africa Research 100000 Wire Europe Research 100000 Wire Europe Research 75167 Wire Europe Research 100000 Wire 10 false false false false false false P1, Ln 2 Please see Schedule I, Part IV. The grant-making processes are the same as P1, Ln 2 those for organizations in the United States. P2, Ln 1 The organization utilizes accrual accounting for its grants made. COLVirtual 52684 52684 52684 52684 52684 true University of Florida PO Box 113001 Gainesville FL 32611 596002052 501c3 495192 0 Research American Thoracic Society 25 Broadway 18th Floor New York NY 10004 202138855 501c3 40000 0 Research Boston University One Silber Way Boston MA 02215 042103547 501c3 80000 0 Research The CHEST Foundation 2595 Patriot Boulevard Glenview IL 60026 363286520 501c3 12500 0 Research Univ of Colorado at Denver 1600 Broadway Denver CO 80202 846000555 501c3 46167 0 Research Columbia University 630 West 168th St Ste 39 New York NY 10027 135598093 501c3 256333 0 Research Brigham & Women's Hospital 75 Francis Street Boston MA 02115 042312909 501c3 199000 0 Research Mayo Clinic 200 First St SW Rochester MN 55902 416011702 501c3 99000 0 Research Baylor College of Medicine 1 Baylor Plaza Houston TX 77030 741613878 501c3 99000 0 Research Saint Louis University 1100 South Grand Boulevard Saint Louis MO 63103 430654872 501c3 189618 0 Research University of N Carolina 104 Airport Dr Chapel Hill NC 27599 566001393 501c3 15897 0 Research Clemson University 105 Sikes Hall Clemson SC 29634 576000254 501c3 56495 0 Research SUNY Research Foundation PO Box 9 Albany NY 12201 141368361 501c3 200000 0 Research Boston Medical Center One Boston Medical Center Pl Boston MA 02118 043314093 501c3 100000 0 Research University of North Texas 1155 Union Circle Denton TX 76203 756002149 501c3 23035 0 Research Nat Org Rare Disorders 55 Kenosia Avenue Danbury CT 06810 133223946 501c3 25000 0 Research 16 16 Educational scholarships 6 15000 Part I Line 2 The Foundation has a Grants Advisory Committee consisting of 21 members and Part I Line 2 a staff member assigned to the committee The membership of the committee Part I Line 2 consists primarily of medical doctors who are Alpha1 experts and Part I Line 2 researchers The committee reviews grant applications for quality and Part I Line 2 applicability of research funds Prior to acceptance the prospective Part I Line 2 grantee is checked against the US Treasurys OFAC list On a quarterly Part I Line 2 basis all grants are peerreviewed for progress before subsequent payments Part I Line 2 are made Final research reports are submitted and peerreviewed before Part I Line 2 final grant payments are made false false false false false false false false false MIRIAM A O'DAY President and CEO 276735 6968 283703 RANDEL H PLANT Sen Dir Research Progs 121544 13213 134757 ANGELA T MCBRIDE Sen Dir Corp Relations 108866 16573 125439 SCOTT SANTARELLA President and CEO MARK B DELVAUX Vice President and CFO JEANINE M D'ARMIENTO Chair ELIZABETH JOHNSON Vice Chair FRED C WALSH Vice Chair JENNIFER JOPP Secretary JON HAGSTROM Treasurer MARTIN R ZAMORA Director KENNETH IRVINE Director PEGGY IVERSON Director ANN KNEBEL Director NOEL G MCELVANEY Director FARON SCHONFELD Director JAMES K STOLLER Director Part II AlphaNet, Inc., another Section 501(c)(3) organization, provided the fiscal Part II 2021 services of the Vice President/CFO under an administrative services Part II agreement in the amount of $100,000. The amount is based on the Part II reasonable estimate of the services provided to the Alpha-1 Foundation. X 1 10230 FMV X Office rent 1 200000 FMV false true false Part VI Line 11b The Form 990 is provided to members of management and the Board of Part VI Line 11b Directors for review prior to filing. Part VI Line 12c Written conflict of interest statements are obtained from all officers, Part VI Line 12c board members and committee members annually. Part VI Line 15a or b Compensation levels are developed using salary surveys and a review of 990s Part VI Line 15a or b for comparable not-for-profit organizations. Part VI Line 18 Form 990 is available on www.alpha1.org, and also upon request. Part VI Line 19 The audited financial statements are available on www.alpha1.org. Governing Part VI Line 19 documents and the conflict of interest policy are available upon request. Part XI Line 9 This amount refers to an audit adjustment made to reflect the value of Part XI Line 9 Alpha-1 Foundation's wholly owned subsidiary, The Alpha-1 Project. Part III Line 4d Expenses: $167712.00 including grants of: $4000.00 Revenue: $210000.00 Part III Line 4d Includes foreign grants Part III Line 4d The mission of Alpha-1 Global is to develop a collaborative global network Part III of Alpha-1 patient leaders, physicians, and researchers. Part III Line 4d Expenses: $121164.00 including grants of: $0.00 Revenue: $230000.00 Part III Line 4d The Foundation's Public Policy program monitors relevant legislation and Part III Line 4d regulatory issues and publicizes the Foundation's positions on such issues. Part III Line 4d Expenses: $174212.00 including grants of: $0.00 Revenue: $240000.00 Part III Line 4d The Alpha-1-To-One Magazine is designed to inform the community of research Part III Line 4d developments, education, advocacy and fund raising opportunities. Part III Line 4d Expenses: $203844.00 including grants of: $0.00 Revenue: $295000.00 Part III Line 4d Alpha-1 Education Days provide access to current medical information and Part III Line 4d resources to hundreds of Alphas, their families, and caregivers. Part III Line 4d Expenses: $507308.00 including grants of: $40000.00 Revenue: $366000.00 Part III Line 4d Other Alpha-1 services include patient education (materials, website, etc), Part III Line 4d a Patient Support Network, and a targeted detection program. Part VII, Line 1a The Vice President and Chief Financial Officer is an employee of AlphaNet, Part VII, Line 1a Inc., an unrelated not-for-profit organization which provides its services Part VII, Line 1a through an administrative services agreement. Part VII, Line 5 AlphaNet Inc., another 501(c)(3) organization, provides the services of the Part VII, Line 5 Vice President and Chief Financial Officer under an administrative services Part VII, Line 5 agreement in the amount of $100,000. The amount is based on the reasonable Part VII, Line 5 estimate of the value of the services provided to the Alpha-1 Foundation. Part VI, Line 17 MD, MA, MI, MN, MS, NH, NJ, NM, NY, ND, OR, PA, RI, SC, TN, UT, WV, WI The Alpha-1 Project Inc 3300 Ponce de Leon Boulevard Coral Gables FL 33134 272040293 Drug Therapies N/A C corp 1427 180065 true false true false false false false false false false false false false false false false false true false false The Alpha-1 Project Inc B 160000 Management approval Q 8266 Management approval