2025-04-15T14:32:34-05:00 2024-05-31 204193611 Batts Morrison Wales & Lee PA 801 North Orange Avenue Suite 800 Orlando FL 32801 990 2023-06-01 650427215 Ataxia Telangiectasia Children's Project Inc ATAX 9544816611 6810 N State Road 7 125 Coconut Creek FL 33073 Bradley A Margus President 9544816611 2025-04-14 1 1 Michele M Wales CPA P00428093 4077706000 2025-04-14 2023 2025-03-06 01:10:19Z Bradley A Margus 6810 N State Road 7 125 Coconut Creek FL 33073 2754789 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 1522450 2222688 0 228400 4346 9223 40819 42051 1567615 2502362 787861 546868 0 0 483752 521775 0 0 162561 209686 827330 1481299 1895973 86316 606389 2125334 2802981 1532442 1603700 592892 1199281 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 546868 546868 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. 241363 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. 679436 228400 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. Historically, the A-T Children's Project, together with its volunteers and families affected by A-T, has organized a wide range of fundraising events to support biomedical research and other programs. These have occasionally included elegant galas and formal dinners. This fiscal year, however, we took a different approach by harnessing the elegant dinner concept for a different purpose. We hosted a groundbreaking event designed to bring together biotech founders, pharmaceutical executives, and healthcare investors to learn about A-T and the work of the A-T Children's Project. Our goal was to spark interest in this ultra-rare disease, inspire fresh research ideas, and encourage companies and venture capitalists to consider A-T when targeting new technologies and therapies. While the event did result in some sponsorships, its greatest success was in opening eyes. It created lasting awareness among industry leaders and revealed the tremendous opportunity they have to impact the lives of A-T families. That momentum continues today, as numerous collaborations and drug discovery efforts are now taking shape between academic groups, industry partners, and the A-T Children's Project - because of the awareness we created. 173856 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. 173856 1641523 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 182079 0 20889 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 182079 0 20889 1 0 1 0 0 5756 851462 1365470 2222688 Program Event Revenue 900099 228400 228400 228400 9223 9223 294478 851462 252427 42051 42051 2502362 228400 0 51274 430868 430868 116000 116000 232251 185801 11613 34837 208766 126782 20140 61844 23222 12108 1161 9953 57536 39535 6164 11837 10899 5674 5225 46407 13080 33327 107191 90924 4595 11672 47120 30628 4712 11780 23266 23258 8 7796 2638 5158 Other Event Expenses 461945 461945 0 0 Event Catering and Meal 88670 88443 227 Miscellaneous Expenses 33107 21317 1535 10255 Registration Fees 834 834 95 95 1895973 1641523 91889 162561 1944777 2614427 135500 143236 178 44879 45318 50441 50441 0 0 2125334 2802981 33476 149248 1498966 1454452 1532442 1603700 X 592892 1199281 592892 1199281 2125334 2802981 606389 0 X X 0 1 X 1 0 X 1035682 1037694 1535378 1522450 2222688 7353892 1035682 1037694 1535378 1522450 2222688 7353892 401864 6952028 3582 1914 2462 4346 9223 21527 691644 473145 332985 260141 294478 2052393 9427812 228400 0.73740 0.69090 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 2502362 0 2502362 0 2502362 1895973 0 1895973 0 1895973 1 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium 0 0 Grants to recipients located in the region 116000 0 0 0 0 0 0 116000 0 116000 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium Medical research 116000 Wire 0 Amount paid 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 143279 109648 33631 5612 Rylie's Angels Dinner 127723 79455 48268 6942 5731 13 874938 662359 212579 4015 3360 76271 150496 1145940 851462 294478 4015 3360 83213 161839 252427 42051 1 University of Pennsylvania TRL Suite 1200 125 South 31st St Philadelphia PA 19104 231352685 501(c)(3) 15500 0 N/A N/A Medical Research Broad Institute 415 Main Street Cambridge MA 02142 263428781 501(c)(3) 110340 0 N/A N/A Medical Research Forgotten Diseases Foundation 604 Malarin Ave Santa Clara CA 95050 454470463 501(c)(3) 7450 0 N/A N/A Medical Research Quanterix 900 Middlesex Turnpike Billerica MA 01820 208957988 N/A 107279 0 N/A N/A Medical Research The Johns Hopkins Hospital 1800 Orleans St Baltimore MD 21287 520591656 501(c)(3) 190299 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 152079 0 30000 0 0 0 0 0 20889 0 202968 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.