2024-03-25T18:38:14-05:00 2023-06-30 990 2022-07-01 650585415 Alpha-1 Foundation Alpha One Foundation % Mark Delvaux ALPH 3055679888 3300 Ponce de Leon Boulevard Miami FL 331347211 MARK DELVAUX CFO 3054421776 2024-03-25 false MARK DELVAUX XXX-XX-XXXX false PATRICK M LUNN P01874332 3054421776 2024-03-25 X 2 AAL2 IAL1 2022 2023-04-26 12:10:37Z Alpha One Foundation MARK B DELVAUX 3300 Ponce de Leon Boulevard Coral Gables FL 33134 28196628 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 13 13 19 300 368000 86623 9050130 8383940 366000 368000 1460203 1628280 13751 73079 10890084 10453299 2583468 2483684 0 1692512 1950610 0 731545 2088226 4113649 6364206 8547943 4525878 1905356 35496616 37662654 2623720 2157188 32872896 35505466 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 3549924 2189684 493071 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, Therapeutic Development Network, and Clinical Reource 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. 490452 258600 270000 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. It is comprised of both patient-supported and clinical data. 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. 823684 10400 916000 Alpha-1 National Conference: The 32nd annual Alpha-1 National Educational Conference was a hybrid conference held on June 9-11, 2023. As the largest annual gathering of the Alpha-1 community, the National Conference provides important opportunities for networking, education, and advocacy. The speakers included some of the leading clinicians and researchers in the Alpha-1 field 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 six years of presentations are available on the Foundation's website at www.alpha1.org. 489559 469600 The mission of Alpha-1 Global is to develop a collaborative global network of Alpha-1 patient leaders, physicians, and researchers. 246185 368000 The Alpha-1-To-One Magazine is designed to inform the community of research developments, education, advocacy and fund raising opportunities. 402768 370000 Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers. 257770 250000 The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues. 822972 25000 390000 Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program. 2219254 25000 1847600 7083314 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 21 0 true 19 true true true false false false false false false false false X 13 13 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 LINDA RODRIGUEZ Development Director 40.00 X 113589 0 2578 RANDEL H PLANT Sen Dir Research Progs 40.00 X 134428 0 11935 ANGELA T MCBRIDE Sen Dir Corp Relations 40.00 X 120202 0 16321 SCOTT SANTARELLA President and CEO 40.00 X 315753 0 13332 MARK B DELVAUX CFO 10.00 X 0 0 0 DARRELL KOTTON Director 4.000 X 0 0 0 VIRGINIA CLARK Physician Director 8.000 X X 0 0 0 FRED C WALSH Vice Chair 8.000 X X 0 0 0 JENNIFER JOPP Director 4.000 X 0 0 0 JON HAGSTROM Chair 8.000 X X 0 0 0 MARTIN R ZAMORA Director Emeritus 4.000 X 0 0 0 KENNETH IRVINE Treasurer 8.000 X X 0 0 0 PEGGY IVERSON Secretary 8.000 X 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 MARK BRANTLY Director 4.000 X 0 0 0 CATHERINE VERNON Director 4.000 X 0 0 0 683972 44166 4 false true true AlphaNet Inc 3300 Ponce de Leon Boulevard Coral Gables FL 33134 Management services 250000 Moses & Singer LLP 405 Lexington Avenue New York NY 10174 Legal services 153349 Original Impressions LLC PO Box 31792 Tampa FL 33631 Printing and publication 169118 Speaking of Science 6916 Prince Georges Avenue Takoma Park MD 20912 Website design 102500 STEPHEN RENNARD 352 N 114th St Omaha NE 68154 Consultant 115000 5 8383940 228196 8383940 Publication income 513120 368000 368000 368000 690915 690915 9140 9140 9140 9140 18589422 17652057 937365 937365 937365 155211 91272 63939 63939 10453299 1637420 368000 63939 1628760 1628760 10400 10400 844524 844524 1597300 1184707 89992 322601 26404 18039 2582 5783 215330 185790 1358 28182 111576 80944 8020 22612 271563 171563 100000 256368 220221 32853 3294 86896 86896 10000 10000 112621 112621 435485 299720 111697 24068 6910 6910 476618 340677 47614 88327 424946 406637 1690 16619 226356 167887 12753 45716 291052 252006 27493 11553 1227611 1122676 44752 60183 6166 4574 347 1245 32599 21980 4634 5985 Telephone 21860 16047 824 4989 Repair and maintenance 20977 15558 1182 4237 Dues and subscriptions 139495 67341 21733 50421 Licenses, fees, and taxes 57557 23557 34000 8569 6353 486 1730 8547943 7083314 733084 731545 7943740 1200391 4433622 508112 675118 949746 167500 86986 417840 408088 12982 9752 21875585 34601529 363069 281138 25000 25000 35496616 37662654 1001973 705296 887727 890392 715000 561500 19020 2623720 2157188 X 29569884 33095472 3303012 2409994 32872896 35505466 35496616 37662654 X 1905356 809153 -81931 X false true X true false X 8335339 7936556 7939893 9050130 8383940 41645858 8335339 7936556 7939893 9050130 8383940 41645858 29288664 12357194 507839 512763 469516 474423 690915 2655456 17767 73156 62038 137860 86623 377444 44678758 0.27658 0.29592 X 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 2023, the Foundation received contributions from 3,418 donors Part II, Line 17 from across the United States. As shown on Schedule B, 44 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 2023 Part II, Line 17 would be above 34% if the support received from AlphaNet, Inc., Part II, Line 17 a Section 501(c)(3) Type 2 charity, was 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. The BOD Part II, Line 17 is distributed across the United States and abroad, including 6 Part II, Line 17 members who have been diagnosed with Alpha-1, 1 who had a family Part II, Line 17 member diagnosed with Alpha-1, 1 registered nurse, and 5 medical Part II, Line 17 doctors who are experts in the field. All members are Part II, Line 17 independent. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 10000 10000 7073314 7083314 504166 126042 false 451409 462805 468710 504166 1887090 2830635 10000 10000 10000 10000 40000 112852 115701 117178 126042 471773 707660 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 217015 207263 9752 9752 The Alpha1 Project 281138 C 281138 Deposits 25000 25000 X 11241095 809153 -8 809145 10431950 112621 -91272 21349 10453299 8526594 91272 91272 8435322 112621 112621 8547943 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. P11, Ln 2d This amount is an adjustment for rounding. P11, Ln 4b This amount reflects special event expenses that are reported at gross in P11, Ln 4b the audited financial statements, rather than netted against special event P11, Ln 4b revenues as is the case on the Form 990. P12, Ln 2d This amount reflects special event expenses that are reported at gross in P12, Ln 2d the audited financial statements, rather than netted against special event P12, Ln 2d revenues as is the case on the Form 990. true Europe 0 1 Program services European public policy 28278 1 1 28278 28278 Europe Research 95638 Wire Europe Research 74269 Wire Europe Research 74500 Wire Europe Research 102000 Wire Europe Research 88701 Wire Europe Research 90000 Wire Europe Research 100000 Wire Europe Research 78000 Wire Europe Research 99750 Wire Europe Research 41666 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. P1, Ln 3, Col F The organization uses the accrual method to account for its expenditures. true University of Florida 1600 SW Archer Road Gainesville FL 32610 596002052 501c3 457398 0 Research Brigham & Women's Hospital 75 Francis Street Boston MA 02115 042312909 501c3 199000 0 Research Boston Medical Center 600 Harrison Avenue Gambro 2 Boston MA 02118 043314093 501c3 99500 0 Research Boston University 25 Buick Street 2nd Floor Boston MA 02215 042103547 501c3 146433 0 Research University of Alabama 1720 2nd Avenue South Ste AB 1170 Birmingham AL 35294 636001138 501c3 74500 0 Research Columbia University 630 West 168th Street Ste 39 New York NY 10027 135598093 501c3 141167 0 Research National Jewish Health 1400 Jackson Street Denver CO 80206 742044647 501c3 140000 0 Research University of Kentucky 741 South Limestone Street Ste B259 Lexington KY 40536 616033693 501c3 100000 0 Research Northwestern University 303 E Chicago Avenue Chicago IL 60611 362167817 501c3 82000 0 Research University of Colorado 1600 Broadway Denver CO 80202 846000555 501c3 31739 0 Research Mass Inst of Technology 77 Massachusetts Avenue Cambridge MA 02139 042103594 501c3 124750 0 Research Saint Louis University 1100 South Grand Boulevard Saint Louis MO 63103 430654872 501c3 5647 0 Research Nat Org Rare Disorders 55 Kenosia Avenue Danbury CT 06810 133223946 501c3 25000 0 Patient support University of N Carolina 104 Airport Drive Chapel Hill NC 27599 566001393 501c3 10000 0 Research 14 0 Educational scholarships 26 10400 Part I Line 2 The Foundation has a Grants Advisory Committee consisting of 25 members Part I Line 2 and 2 staff members assigned to the committee The membership of the Part I Line 2 committee consists 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 X X X X X X false false false false false false false false false LINDA RODRIGUEZ Development Director 113589 113589 RANDEL H PLANT Sen Dir Research Progs 134428 134428 ANGELA T MCBRIDE Sen Dir Corp Relations 120202 120202 SCOTT SANTARELLA President and CEO 315753 13332 329085 MARK B DELVAUX CFO DARRELL KOTTON Director VIRGINIA CLARK Physician Director FRED C WALSH Vice Chair JENNIFER JOPP Director JON HAGSTROM Chair MARTIN R ZAMORA Director Emeritus KENNETH IRVINE Treasurer PEGGY IVERSON Secretary ANN KNEBEL Director NOEL G MCELVANEY Director FARON SCHONFELD Director MARK BRANTLY Director CATHERINE VERNON Director Part II AlphaNet, Inc., another 501(c)(3) organization, provided the fiscal 2023 Part II services of the CFO under an administrative services agreement in the Part II amount of $100,000. The amount is based on a reasonable estimate of the Part II services provided to the Alpha-1 Foundation. X 2 13196 FMV X Office rent 1 215000 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 on an annual basis. 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 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: $489559.00 including grants of: $0.00 Revenue: $469600.00 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: $246185.00 including grants of: $0.00 Revenue: $368000.00 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: $402768.00 including grants of: $0.00 Revenue: $370000.00 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: $257770.00 including grants of: $0.00 Revenue: $250000.00 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: $822972.00 including grants of: $25000.00 Revenue: $390000.00 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 VI, Line 17 The Alpha-1 Foundation is registered to accept charitable donations in all Part VI, Line 17 states that require it. Part VII, Line 1a The Chief Financial Officer is an employee of AlphaNet, Inc., an unrelated Part VII, Line 1a not-for-profit organization which provides its services through an Part VII, Line 1a administrative services agreement. Part VII, Line 5 AlphaNet, Inc., another 501(c)(3) organization, provides the services of Part VII, Line 5 the Chief Financial Officer under an administrative services agreement in Part VII, Line 5 the amount of $100,000. The amount is based on the reasonable estimate of Part VII, Line 5 the value of the services provided to the Alpha-1 Foundation. The Alpha-1 Project 3300 Ponce de Leon Boulevard Coral Gables FL 33134 272040293 Drug therapies DE N/A C Corp 1.00000 true false false false false false false false false false false false false false false false false false false false