2025-05-15T11:12:14-07:00 2024-06-30 990 2023-07-01 650585415 ALPHA-1 FOUNDATION INC ALPH 3055679888 3300 Ponce de Leon Blvd Miami FL 331347211 Mark Delvaux CFO 3056489540 2025-05-15 1 2023 2025-03-06 01:10:19Z Scott Santarella 3300 Ponce de Leon Blvd Miami FL 33134 32410581 0 X alpha1.org X 1995 FL The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of Alphas worldwide. 13 13 19 300 373667 95763 8383940 8897971 368000 373667 1628280 2181265 73079 161477 10453299 11614380 2483684 3230157 0 0 1950610 2245923 0 0 991401 4113649 4616956 8547943 10093036 1905356 1521344 37662654 44464081 2157188 2581193 35505466 41882888 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. 0 0 4056006 2179284 973984 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 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. 618350 258600 255000 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. 877911 10400 1048462 Alpha-1 National Conference: The 33rd annual Alpha-1 National Educational Conference was a hybrid conference held on June 7-9, 2024. 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. 481462 0 302500 Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers. 301529 25000 260000 The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues. 2133708 0 1184704 Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program. 2916699 25000 1747204 8468966 1 1 0 1 0 1 0 0 0 0 1 0 0 0 0 1 1 1 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 1 27 0 1 19 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 13 13 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL KS KY MA MD MI MN MS NC ND NH NJ NM NY OR PA RI SC TN UT VA WI WV X X Mark Delvaux 3055679888 3300 Ponce de Leon Blvd Coral Gables FL 33134 X Scott Santarella President and CEO 40 0 X 330774 0 25323 Randel H Plant Sen Dir Research Progs 40 X 143033 0 12642 Angela T McBride Sen Dir Corp Relations 40 0 X 127368 0 18601 Linda Rodriguez Development Director 40 0 X 122295 0 6436 Jeanne Kushner Sr Dir of Communications 40 0 X 100532 0 27513 Darrell Kotton Director 4 0 X 0 0 0 Virginia Clark Physician Director 8 0 X X 0 0 0 Fred C Walsh Vice Chair 8 0 X X 0 0 0 Jennifer Jopp Director 4 0 X 0 0 0 Jon Hagstrom Chair 8 0 X X 0 0 0 Kenneth Irvine Treasurer 8 0 X X 0 0 0 Peggy Iverson Secretary 8 0 X X 0 0 0 Ann Knebel Director 4 0 X 0 0 0 Noel G McElvaney Director 4 0 X 0 0 0 Faron Schonfeld Director 4 0 X 0 0 0 Mark Brantly Director 4 0 X 0 0 0 Catherine Vernon Director 4 0 X 0 0 0 Mark B Delvaux CFO 10 X 0 0 0 824002 0 90515 5 0 1 1 AlphaNet Inc 3300 Ponce de Leon Blvd Coral Gables FL 33134 Management services 282761 Moses & Singer LLP 405 Lexington Ave New York NY 10174 Legal Services 262489 Sight & Sound Productions LLC 3636 Beachwood Ct Jacksonville FL 32224 Video Production 203385 Speaking of Science 6916 Prince Georges Ave Takoma Park MD 20912 Website design 175085 Original Impressions LLC PO Box 31792 Tampa FL 33631 Printing and publishing 120540 7 0 0 0 0 0 8897971 25310 8897971 Publication Income 513120 373667 0 373667 0 0 0 0 0 373667 939887 939887 0 0 0 0 0 0 0 0 0 0 6580 0 0 0 6580 0 6580 6580 0 0 21858360 0 20616982 0 1241378 0 1241378 1241378 0 0 334116 0 179219 154897 0 154897 0 0 0 0 0 0 0 0 0 0 0 0 0 11614380 2187845 373667 154897 2226492 2226492 50000 50000 953665 953665 1825860 1444939 35982 344939 46619 35401 1416 9802 245870 214324 2637 28909 127574 100840 2539 24195 162500 0 162500 0 408771 381611 24268 2892 89845 0 89845 0 61500 61500 0 0 0 0 0 860265 780321 63766 16178 468854 305704 39820 123330 466162 458838 981 6343 49779 0 6900 42879 332747 256875 49682 26190 1453803 1090509 96803 266491 5281 4133 159 989 32959 23710 3576 5673 Telephone 25085 18735 520 5830 Repairs and Maintenance 25524 19975 769 4780 Dues and subscriptions 102253 35155 26523 40575 Licenses, Fees and Taxes 63656 0 23743 39913 7972 6239 240 1493 10093036 8468966 632669 991401 1200391 992958 508112 1052795 0 949746 921723 0 0 0 0 0 0 0 0 86986 195920 424073 413368 9752 10705 34601529 39774063 0 0 281138 1490917 0 0 25000 25000 37662654 44464081 705296 1000326 890392 941034 561500 639833 0 0 0 0 0 0 0 2157188 2581193 X 33095472 39896406 2409994 1986482 35505466 41882888 37662654 44464081 X 1521344 3794857 0 -148558 0 1209779 X 0 1 X 1 0 X 7936556 7939893 9050130 8383940 8872661 42183180 7936556 7939893 9050130 8383940 8872661 42183180 32044790 10138390 512763 469516 474423 690915 939909 3087526 73156 62038 137860 86623 95763 455440 45726146 0.22172 0.2766 X The public support percentage for fiscal 2023 would be above 33 1/3% if the support received from AlphaNet, Inc., a Section 501(c)(3) type 2 charity, was excluded from this computation. The support received from AlphaNet has provided funding to support detection of Alpha-1 affected persons, research for improved therapies, and a cure for Alpha-1. Schedule A, Part II, Line 17a The Alpha-1 Foundation maintains an ongoing solicitation program from the general public. During the fiscal year ended June 30, 2024, the Foundation received contributions from 3408 donors from across the United States. As shown on Schedule B, 48 donors contributed amounts of $5,000 or higher. Fund raising activities include a general campaign, special events, and other fundraising appeals. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6500 55000 61500 10225508 10287008 664350 166088 0 0 462805 468710 504166 664350 2100031 3150047 10000 10000 10000 61500 91500 115701 117178 126042 166088 525009 787514 10000 10000 10000 6500 36500 1 0 0 0 0 0 28369 0 1 1 0 0 0 0 0 0 0 200825 0 200825 0 223248 0 212543 10705 0 0 0 0 10705 0 X 15439898 3794857 0 0 0 3794857 11645041 148558 -179219 -30661 11614380 10272255 0 0 0 179219 179219 10093036 0 0 0 10093036 Schedule D, Part X, Line 2 The Foundation has adopted the provisions of ASC No. 740 "Income Taxes." Under ASC 740, the Foundation must recognize the tax liability (or benefit) associated with tax positions taken for tax return purposes when it is more-likely-than-not that the position will be sustained. The adoption of ASC 740 had no impact on the Foundation's consolidated financial statements. management of the Foundation does not believe there are any material uncertain tax positions and accordingly has not recorded any liability for unrecognized tax benefits. Schedule D, Part XI, Line 4b This amount reflects special event expenses that are reported at gross in the audited financial statements, rather than netted against special event revenues as is the case on the Form 990. Schedule D, Part XII, Line 2d This amount reflects special event expenses that are reported at gross in the audited financial statements, rather than netted against special event revenues as is the case on the Form 990. 1 Europe (including Iceland and Greenland) 0 1 Program Services European public policy 35093 0 1 35093 Europe (including Iceland and Greenland) Research 18614 Wire Europe (including Iceland and Greenland) Research 74625 Wire Europe (including Iceland and Greenland) Research 49723 wire Europe (including Iceland and Greenland) Research 49849 wire Europe (including Iceland and Greenland) Research 24875 wire Europe (including Iceland and Greenland) Research 204973 wire Europe (including Iceland and Greenland) Research 224094 wire Europe (including Iceland and Greenland) Research 288458 wire East Asia and the Pacific Research 18453 wire 9 0 0 0 0 0 0 0 Schedule F, Part I, Line 2 Please see Schedule I, Part IV. The grant-making processes are the same as those for organizations in the United States. Schedule F, Part I, Line 3 The organization uses the accrual method to account for its expenditures. Building Friends for a Cure 535152 201036 334116 0 0 40475 3740 0 135004 0 0 535152 201036 334116 0 0 40475 3740 0 135004 179219 154897 1 University of Florida 1600 SW Archer Road Gainesville FL 32610 596002052 501 (c) (3) 523817 Research Brigham & Women's Hospital 75 Francis St Boston MA 02115 042312909 501 (c) (3) 397375 Boston Medical Center 600 Harrison Ave Gambro 2 Boston MA 02118 043314093 501 (c) (3) 99500 Boston University 25 Buick Street 2nd Floor Boston MA 02215 042103547 501 (c) (3) 185618 University of Alabama 1720 2nd Ave South St AB 1170 Birmingham AL 35294 636001138 501 (c) (3) 124500 Columbia University 630 West 168th St Ste 39 New York NY 10027 135598093 501 (c) (3) 234375 National Jewish Health 1400 Jackson St Denver CO 80206 742044647 501 (c) (3) 40000 University of Colorado 1600 Broadway Denver CO 80202 846000555 501 (c) (3) 70000 University of Chicago 5801 South Ellis Avenue Chicago IL 60637 362177139 501 (c) (3) 62148 Clemson University 391 College Ave Ste 302 Clemson SC 29634 576000254 501 (c) (3) 99452 Baylor College of Medicine PO Box 201361 Houston TX 77216 741613878 501 (c) (3) 124350 NORD Dept 5430 PO Box 4110 Woburn MA 01888 133223946 501 (c) (3) 30000 University of Kansas Medical Center Research Institute 3901 Rainbow Blvd MS 1039 Kansas City KS 66160 480680117 501 (c) (3) 16004 Regents of the University of California Los Angeles 10920 Wilshire Blvd Suite 600 Los Angeles CA 90024 956006143 501 (c) (3) 233749 Research 14 0 Educational Scholarships-The Educational Scholarship program is designed to assist those in need to further their education and the opportunities available to them to support their families. This program is available to Alphas and their immediate family members. Scholarship recipients are selected by an Alpha-1 Foundation Scholarship Review Committee. Must be an accredited college or trade school. 10 100000 FMV National Conference Scholarships-These scholarships are provided to Alphas nationwide to attend the National Conference. Those with financial need and first-time attendees are prioritized. The scholarship covers $500 airfare, hotel and parking for three nights, conference registration. 100 50000 FMV Schedule I, Part I, Line 2 The Foundation has a Grants Advisory Committee consisting of 25 members and 2 staff members assigned to the committee. The membership of the committee consists of medical doctors who are Alpha-1 experts and researchers. The committee reviews grant applications for quality and applicability of research funds. Prior to acceptance, the prospective grantee is checked against the US Treasury's OFAC list. On a quarterly basis, all grants are peer-reviewed for progress before subsequent payments are made. Final research reports are submitted and peer-reviewed before final grant payments are made. X X X X X X 0 0 0 0 0 0 0 0 0 Scott Santarella President and CEO 330774 0 0 0 0 0 0 0 25323 0 356097 0 0 0 Mark B Delvaux CFO 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Schedule J, Part II AlphaNet, Inc., another 501 (c) (3) organization, provided the fiscal 2024 services of the CFO under an administrative services agreement in the amount of $100,000. the amount is based on a reasonable estimate of the services provided to the Alpha-1 Foundation. X 1 25310 FMV X Office rent 1 222500 FMV 0 0 1 0 Form 990, Part VI, Section B, Line 11b The Form 990 is provided to members of management and the Board of Directors for review prior to filing. Form 990, Part VI, Section B, Line 12c Written conflict of interest statements are obtained from all officers, board members, and committee members on an annual basis. Form 990, Part VI, Section B, Line 15 Compensation levels are developed using salary surveys and a review of 990s for comparable not-for-profit organizations. Form 990, Part VI, Section C, Line 17 The Alpha-1 Foundation is registered to accept charitable donations in all states that require it. Form 990, Part VI, Section C, Line 18 Form 990 is available on www.alpha1.org, and also upon request. Form 990, Part VI, Section C, Line 19 Audited financial statements are available on www.alpha1.org. Governing documents and the conflict of interest policy are available upon request. Form 990, Part VII, Section A, Line 1a The Chief Financial Officer is an employee of AlphaNet, Inc., an unrelated not-for-profit organization which provides its services through an administrative services agreement. Form 990, Part VII, Section A, Line 5 AlphaNet, Inc., another 501 (c) (3) organization, provides the services of the Chief Financial Officer under an administrative services agreement in the amount of $100,000. the amount is based on the reasonable estimate of the value of the services provided to the Alpha-1 Foundation. Form 990, Part XI, Line 9 This amount refers to an audit adjustment made to reflect the value of Alpha-1 Foundation's wholly owned subsidiary, The Alpha-1 Project. The Alpha-1 Project 3300 Ponce de Leon Blvd Coral Gables FL 33134 272040293 Drug therapies FL Alpha-1 Foundation C 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Extension was timely filed