2026-03-26T17:19:06-05:00 2025-05-31 204193611 Batts Morrison Wales & Lee PA 801 North Orange Avenue Suite 800 Orlando FL 32801 990 2024-06-01 650427215 Ataxia Telangiectasia Children's Project Inc ATAX 9544816611 6810 N State Road 7 125 Coconut Creek FL 33073 Bradley A Margus President 9544816611 2026-03-12 1 1 Michele M Wales CPA P00428093 4077706000 2026-03-12 2024 2025-03-06 01:10:19Z Bradley A Margus 6810 N State Road 7 125 Coconut Creek FL 33073 2039246 0 X www.atcp.org X 1993 FL Organizing and supporting innovative research, conferences, clinical teams, data platforms, and biomarker development to optimize disease management strategies, develop new treatments, and find a cure for A-T, a genetic disease that causes loss of muscle control, cancer, lung disease, and immune system problems. 10 9 4 1000 0 0 2222688 1700157 228400 42657 9223 29615 42051 36444 2502362 1808873 546868 1305119 0 0 521775 530016 0 0 165335 827330 382298 1895973 2217433 606389 -408560 2802981 3075666 1603700 2284945 1199281 790721 X Ataxia-telangiectasia (A-T) is a genetic disease that causes loss of muscle control and balance, cancer, lung disease, and immune system problems in children and young adults, shortening their lives. The nonprofit A-T Children's Project partners with academic and industry investigators worldwide - organizing and supporting innovative research, conferences, clinical team, data platforms, and biomarker development - to optimize disease management strategies, develop new treatments, and find a cure. 0 0 1305119 1305119 Research and Clinical GrantsThe A-T Children's Project provides competitive awards for scientific and clinical research grants related to finding life-improving therapies and a cure for ataxia-telangiectasia. Scientific excellence and relevance to A-T are the paramount criteria used to select research projects. Grant award decisions are made through a careful and detailed, two-tiered peer-review selection process. Consistent with the urgency felt by all families impacted by this disease, the A-T Children's Project's current focus is on funding innovative research strategies that look at A-T in new ways and that include a clear 'yes or 'no' answer to the hypothesis rather than merely defining a mechanism. Highest priority is given to projects that, while drawing on basic discoveries, include creative strategies for suggesting and evaluating specific disease-modifying and symptomatic interventions. 375320 42657 Conferences and Research SupportThe A-T Children's Project holds scientific meetings and workshops regularly as a way to encourage more cooperation between A-T research teams, to reduce redundancy in their work, and to bring scientists from different fields together to generate new research strategies. The agendas always include presentations of unpublished data and open discussions and debate. The Organization also sponsors scientific conferences whose mission falls within this realm. The Organization has found that these scientific meetings, properly orchestrated generate new research strategies, help to form new collaborations between previously competing labs, and encourage sharing of limited patient tissue samples and animal models of A-T between labs. They consistently help to accelerate research progress. Additionally, staff of the A-T Children's Project coordinate the Global A-T Family Data Platform, a patient-driven effort overseen by A-T families and experts worldwide through which health information, genetic, and potentially other types of data about people with A-T can be shared with researchers, enabling them to access important patient data from around the world quickly, securely, and efficiently, hopefully leading to new discoveries. 180435 Awareness and EducationThe A-T Children's Project maintains a database of people interested in receiving news and other information from the A-T Children's Project including families, extended family members, friends, caregivers, therapists, doctors, donors, volunteers, nonprofit organizations, and others interested in learning about A-T and our progress. The Organization does not charge membership fees or other fees for educational and awareness materials. Additional awareness activities include: making sure event attendees know what A-T is and the importance of the work they are supporting; conducting outreach to assist with the timely and accurate diagnosis of A-T; creating materials to help explain A-T and the Organization's research progress; answering questions and providing materials to constituents and the general public about A-T; and, maintaining a website with up-to-date information about the disease and the Organization's research projects. 100432 Family SupportThe A-T Children's Project developed and maintains an A-T patient registry. In addition to helping families searching for the proper diagnosis, the Organization helps them by providing support, putting them in touch with other A-T families, and assisting them with scheduling evaluations at the A-T Clinical Center at Johns Hopkins. The families contact the Organization through email, phone, website, and social media platforms such as Facebook. Each newly diagnosed family gets an information package including the Caring for People with A-T handbook. The Organization typically corresponds and speaks with parents often to help them understand this rare disease and what it means for their families throughout their children's lives. A-T families and extended family members also receive information updating them on current A-T biomedical and clinical research happenings. The Organization also publishes and distributes their Caring for People with A-T handbook free of charge. This handbook gives specific medical information about A-T for families and caregivers. The Organization also plans and hosts Caregiver Weekends periodically to give parents and other caregivers opportunities to formally and informally build connections; speak openly about sensitive subjects related to A-T; and, learn directly from clinicians and researchers. 100432 1961306 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 4 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 10 9 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT DC FL GA HI IL KS ME MD MA MI MN MS MO NH NJ NM NV ND OH OK OR PA RI SC TN UT VA WA WV WI X Bradley A Margus President 9544816611 6810 N State Road 7 Coconut Creek FL 33073 Bradley A Margus President 20.00 X X 0 0 0 Amy Madison Vice President 1.00 X X 0 0 0 Gregory Jehlik Secretary 1.00 X X 0 0 0 Timothy Rahall Treasurer 3.00 X X 0 0 0 Jennifer Thornton Executive Director/Director 50.00 X 220950 0 20805 John Feeley Director 1.00 X 0 0 0 Elizabeth Hughes Director 2.00 X 0 0 0 Robert Middlebrook Director 1.00 X 0 0 0 David Veldink Director 1.00 X 0 0 0 Douglas Weckstein Director 1.00 X 0 0 0 220950 0 20805 1 0 1 0 0 2499 857320 840338 1700157 Research Income 541700 42657 42657 42657 29615 29615 266817 857320 230373 36444 36444 1808873 42657 0 66059 810119 810119 495000 495000 232754 186203 11638 34913 219953 133627 20898 65428 22856 13483 1905 7468 54453 36772 3801 13880 13999 3299 10700 29544 29544 64963 52034 6099 6830 45184 29357 4500 11327 45500 42509 775 2216 26871 26871 11344 3408 7936 Event Services Catering 49902 49169 733 Other Event Expenses 44731 44731 Miscellaneous Expenses 44176 38714 4105 1357 Bank Fees 3367 820 2547 2717 2717 2217433 1961306 90792 165335 2614427 475417 143236 2563101 45318 37148 50441 50441 0 0 2802981 3075666 149248 146581 1454452 2138364 1603700 2284945 X 1199281 790721 1199281 790721 2802981 3075666 -408560 0 X X 0 1 X 1 0 X 1037694 1535378 1522450 2222688 1700157 8018367 1037694 1535378 1522450 2222688 1700157 8018367 592260 7426107 1914 2462 4346 9223 29615 47560 473145 332985 260141 294478 266817 1627566 9693493 271057 0.76610 0.73740 X Part II, Section B, Line 10: Other income includes income from fundraising activities. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 50441 50441 0 0 1808873 0 1808873 0 1808873 2217433 0 2217433 0 2217433 1 Europe 0 0 Grants to recipients located in the region 395000 East Asia and the Pacific 0 0 Grants to recipients located in the region 100000 0 0 0 0 0 0 495000 0 495000 East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, Medical research 100000 Wire 0 Amount paid Europe Medical research 395000 Wire 0 Amount paid 1 1 0 0 0 0 0 0 Part I, Line 2: Grants are made to accredited schools of higher education with world-renowned research departments, hospitals, or companies with specific technologies for the purpose of direct research on ataxia-telangiectasia. Detailed research grant proposals must be submitted. Grants are only made upon thorough review and approval by the Scientific Advisory Network and Board of Directors. Grantees are required to submit progress reports at six-month intervals and at the conclusion of their grants. These reports ensure that the grant funds are expended as contracted. Rustic Run 147480 117377 30103 2043 Brave Golf 104935 47880 57055 23085 18141 17 871722 692063 179659 4758 2005 68634 111707 1124137 857320 266817 4758 2005 91719 131891 230373 36444 1 Quanterix 900 Middlesex Turnpike Billerica MA 01820 208957988 N/A 9902 0 N/A N/A Medical Research Duke Cancer Institute 300 West Morgan St Suite 1000 Durham NC 27701 560532129 501(c)(3) 600000 0 N/A N/A Medical Research University of Pennsylvania 125 South 31st St TRL Suite 1200 Philadelphia PA 19104 231352685 501(c)(3) 13550 0 N/A N/A Medical Research Children's Hospital of Philadelphia 3401 Civic Center Blvd Philadelphia PA 19104 231352166 501(c)(3) 18000 0 N/A N/A Medical Research The Johns Hopkins Hospital 1800 Orleans St Baltimore MD 21287 520591656 501(c)(3) 163717 0 N/A N/A Medical Research 4 1 Part I, Line 2: Grants are made to accredited schools of higher education with world-renowned research departments, hospitals, or companies with specific technologies for the purpose of direct research on ataxia-telangiectasia. Detailed research grant proposals must be submitted. Grants are only made upon thorough review and approval by our Scientific Advisory Network and Board of Directors. Grantees are required to submit progress reports at six-month intervals and at the conclusion of their grants. These reports ensure that the grant funds are expended as contracted. X X X 0 0 0 0 0 0 0 0 0 Jennifer Thornton Executive Director/Director 164431 0 40000 0 16519 0 0 0 20805 0 241755 0 0 0 Form 990, Part VI, Section B, line 11b A copy of the 990 is provided to the A-T Children's Project Board of Directors via email prior to filing. Any questions from the Board are addressed. Form 990, Part VI, Section B, line 12c The A-T Children's Project regularly monitors and enforces compliance with the Conflict of Interest policy. A review of the policy and discussion of potential conflicts of interest are on the agenda for discussion at the annual Board of Directors meeting at which time members are asked to disclose any conflicts. Additionally, members sign the Conflict of Interest policy annually. Form 990, Part VI, Section B, line 15 The process for determining the compensation of the A-T Children's Project Executive Director includes review and approval by independent persons, comparability data, and a contemporaneous substantiation of the deliberation and decisions. The independent Compensation Committee of the Board of Directors deliberates compensation using current comparative data and specific objectives met by the Executive Director. The Committee's findings are then thoroughly reviewed and subject to approval by the Board of Directors. Form 990, Part VI, Section C, line 19 The Organization provides, upon request, copies of its Articles of Incorporation, bylaws, conflict of interest policy, and its financial statements. Form 990, Part XII, Line 2c: The Organization's Board of Directors, or a committee thereof, assumes responsibility for the oversight of the audit of its financial statements and the selection of an independent accountant. This process has not changed from the prior year.