2026-08-20T10:44:34-04:00 2025-12-31 843085028 FOUNDATION GROUP INC 7021 UNIVERSITY BLVD WINTER PARK FL 327926719 990 2025-01-01 833367375 HAYSTACK PROJECT INC HAYS 6143546036 637 EMERSON PLACE SEVERNA PARK MD 21146 KARA BERASI CEO 6143546036 2026-08-19 true ANDREW D PAYNE EA P02188892 8778579002 2026-08-20 2025 2025-03-06 01:10:19Z KARA BERASI 637 EMERSON PLACE SEVERNA PARK MD 21146 448047 false X WWW.HAYSTACKPROJECT.ORG X 2019 MD HAYSTACK PROJECT BRINGS TOGETHER STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE MEDICAL CONDITIONS TO EDUCATE THEM AND ASSIST THEM WITH THEIR SELF ADVOCACY EFFORTS. 10 9 0 9 0 759000 448047 0 0 0 759000 448047 0 0 36000 36000 0 0 489956 485673 525956 521673 233044 -73626 402109 328483 0 402109 328483 X HAYSTACK PROJECT BRINGS TOGETHER STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE MEDICAL CONDITIONS TO EDUCATE THEM AND ASSIST THEM WITH THEIR SELF ADVOCACY EFFORTS. false false 519281 THE ORGANIZATION BRINGS TOGETHER PATIENT ORGANIZATIONS REPRESENTING PATIENTS SUFFERING FROM OR CARING FOR PATIENTS WITH EXTREMELY RARE DISEASES. THIS IS ACCOMPLISHED THROUGH EDUCATING POLICYMAKERS AND STAKEHOLDERS ABOUT THE BARRIERS FDA PROCESSES AND INSURANCE FRAMEWORKS CREATE AND PERPETUATE IN RARE AND ULTRA-RARE DISEASES AND HELP THEM RECOGNIZE THE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS AND TREATMENTS AND EXPAND INCENTIVES CRITICAL TO ENSURING THEY CAN REACH PATIENTS. POLICY INITIATIVES AND RARE DISEASE PRIORITIES: HAYSTACK PROJECT WORKS WITH PATIENTS TO HELP THEM LEARN HOW TO ADVOCATE FOR THEIR COMMUNITIES AND IMPROVE. MODERNIZATION OF RARE DISEASE CLINICAL TRIALS: WORK FOCUSED ON RETHINKING CLINICAL TRIALS FOR RARE DISEASES. PATIENT EDUCATION & ENGAGEMENT: SPEAKER SERIES WHERE WE BRING VARIOUS EXPERTS TO SPEAK TO ISSUES RELATED TO RARE DISEASES. MEMBER ORGANIZATIONS ARE ABLE TO LISTEN AND ASK QUESTIONS. ALSO CONDUCT MEMBER MEETINGS TO EDUCATE ABOUT CURRENT EVENTS, HAYSTACK INITIATIVES, AND HELP ANSWER QUESTIONS. 519281 true true false true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true false false false false false false false false false true 5 0 true 0 false false false false false false false false X 10 9 false false false false false false false true true false false true true true true true false true false false MD X X KARA BERASI 6143546036 637 EMERSON PLACE SEVERNA PARK MD 21146 KARA BERASI CEO 20.00 0.00 X X 36000 0 0 VICTORIA BLATTER DIRECTOR 1.00 0.00 X 0 0 0 JIM CARO DIRECTOR 1.00 0.00 X 0 0 0 CHRISTINA NYQUIST DIRECTOR 1.00 0.00 X 0 0 0 LISA STEELMAN DIRECTOR 1.00 0.00 X 0 0 0 LYNN TAYLOR DIRECTOR 1.00 0.00 X 0 0 0 SUSAN THORNTON BOARD CHAIR/ 1.00 0.00 X X 0 0 0 CHEVESE TURNER SECRETARY 1.00 0.00 X X 0 0 0 KRISTEN WHEEDEN PATIENT REP. 1.00 0.00 X X 0 0 0 JANET WOODCOCK DIRECTOR 1.00 0.00 X 0 0 0 36000 false false false CONSILIUM STRATEGIES 900 EAST FORT ROAD UNIT 428 BALTIMORE MD 21230 CONSULTING 282500 CONNECT 4 STRATEGIES 6005 GLOSTER ROAD BETHESDA MD 20816 CONSULTING 135000 2 448047 448047 448047 X 36000 36000 1500 1500 479512 479512 70 70 892 892 1550 1550 880 880 WORKSHOP EXPENSES 1269 1269 521673 519281 2392 0 402109 328483 402109 328483 0 0 X 402109 328483 402109 328483 402109 328483 -73626 X false false false X 482707 476038 226966 759000 448047 2392758 482707 476038 226966 759000 448047 2392758 1162633 1230125 2392758 0.51410 0.48750 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false false false false true 10000 false false 10000 false SCHEDULE C, PART IV PART II-B LINE 1A, 1B, 1E, AND 1G THE ORGANIZATION UTILIZES VOLUNTEERS AND PAID CONSULTANTS TO RESEARCH POLICIES AND PROVIDE EDUCATION FOR LEGISLATORS ON RARE AND ULTRA-RARE DISEASE ISSUES. CONNECT 4 STRATEGIES FOUNDER OF ORG 135000 RESEARCH AND SUPPORT false FORM 990, PAGE 2, PART III, LINE 4A THE ORGANIZATION BRINGS TOGETHER PATIENT ORGANIZATIONS REPRESENTING PATIENTS SUFFERING FROM OR CARING FOR PATIENTS WITH EXTREMELY RARE DISEASES. THIS IS ACCOMPLISHED THROUGH EDUCATING POLICYMAKERS AND STAKEHOLDERS ABOUT THE BARRIERS FDA PROCESSES AND INSURANCE FRAMEWORKS CREATE AND PERPETUATE IN RARE AND ULTRA-RARE DISEASES AND HELP THEM RECOGNIZE THE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS AND TREATMENTS AND EXPAND INCENTIVES CRITICAL TO ENSURING THEY CAN REACH PATIENTS. POLICY INITIATIVES AND RARE DISEASE PRIORITIES: HAYSTACK PROJECT WORKS WITH PATIENTS TO HELP THEM LEARN HOW TO ADVOCATE FOR THEIR COMMUNITIES AND IMPROVE. MODERNIZATION OF RARE DISEASE CLINICAL TRIALS: WORK FOCUSED ON RETHINKING CLINICAL TRIALS FOR RARE DISEASES. PATIENT EDUCATION & ENGAGEMENT: SPEAKER SERIES WHERE WE BRING VARIOUS EXPERTS TO SPEAK TO ISSUES RELATED TO RARE DISEASES. MEMBER ORGANIZATIONS ARE ABLE TO LISTEN AND ASK QUESTIONS. ALSO CONDUCT MEMBER MEETINGS TO EDUCATE ABOUT CURRENT EVENTS, HAYSTACK INITIATIVES, AND HELP ANSWER QUESTIONS. FORM 990, PAGE 6, PART VI, LINE 11B THE ORGANIZATION REVIEWS THE 990 FORM AT A BOARD MEETING PRIOR TO SUBMITTING TO THE IRS. FORM 990, PAGE 6, PART VI, LINE 12C THE ORGANIZATION ENFORCED COMPLIANCE WITH ITS CONFLICT OF INTEREST POLICY BY REVIEWING IT PERIODICALLY AT BOARD MEETINGS. FORM 990, PAGE 6, PART VI, LINE 15A THE ORGANIZATION USES THE FOLLOWING METHODS TO ESTABLISH COMPENSATION PACKAGES FOR ITS EMPLOYEES: APPROVAL BY THE BOARD. FORM 990, PAGE 6, PART VI, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, & FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC VIA ORGANIZATION'S WEBSITE & UPON REQUEST. FORM 990, PART IX, LINE 11G CONSULTATION 417,500 0 0 CONTRACT LABOR 62,012 0 0 TOTAL 479,512 0 0