2024-03-01T11:34:47-06:00 2023-05-31 204193611 Batts Morrison Wales & Lee PA 801 North Orange Avenue Suite 800 Orlando FL 32801 990 2022-06-01 650427215 Ataxia Telangiectasia Children's Project Inc ATAX 9544816611 6810 N State Road 7 125 Coconut Creek FL 33073 Bradley A Margus President 9544816611 2024-02-12 1 Bradley Margus 999009999 0 Kaylyn A Varnum CPA P01691975 4077706000 2024-02-12 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z Bradley A Margus 6810 N State Road 7 125 Coconut Creek FL 33073 1786937 0 X www.atcp.org X 1993 FL Organizing and supporting innovative research, conferences, clinical teams, data platforms and biomarkers 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 1535378 1522450 0 0 2462 4346 201347 40819 1739187 1567615 1141865 787861 0 0 400810 483752 0 0 156802 170671 209686 1713346 1481299 25841 86316 2011038 2125334 1504462 1532442 506576 592892 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 biomarkers - to optimize disease management strategies, develop new treatments and find a cure. 0 0 787861 787861 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. 200072 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. 173829 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. 83835 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. 83835 1245597 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 180762 0 14202 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 180762 0 14202 1 0 1 0 0 3151 700712 818587 1522450 4346 4346 245136 700712 219322 25814 25814 Prior Year Grant Recov 900099 15005 15005 15005 1567615 0 0 45165 521861 521861 266000 266000 198332 138832 9917 49583 197075 133778 17588 45709 40085 27352 1177 11556 48260 33191 3702 11367 8747 3247 5500 28606 28606 48419 25865 3559 18995 41525 26821 4664 10040 12090 11417 114 559 8329 8329 2779 2779 Other Fundraising Event 29595 29383 53 159 Miscellaneous expenses 20551 16040 1177 3334 Registration Fees 5653 5653 Bank fees 2218 2218 1174 1075 99 1481299 1245597 78900 156802 1868696 1944777 132495 135500 757 178 9090 44879 50441 50441 0 0 2011038 2125334 35886 33476 1468576 1498966 1504462 1532442 X 506576 592892 506576 592892 2011038 2125334 86316 0 X X 0 1 X 1 0 X 1047906 1035682 1037694 1535378 1522450 6179110 1047906 1035682 1037694 1535378 1522450 6179110 88699 6090411 3429 3582 1914 2462 4346 15733 862300 691644 473145 332985 260141 2620215 8815058 0.69090 0.64760 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 1552610 0 1552610 15005 15005 1567615 1466294 0 1466294 15005 15005 1481299 Part XI, Line 4b - Other Adjustments: Prior Year Grant Recovery Part XII, Line 4b - Other Adjustments: Prior Year Grant Recovery 1 Europe (Including Iceland & Greenland) 0 0 Grants to recipients located in the region 166000 East Asia and the Pacific 0 0 Grants to recipients located in the region 100000 0 0 0 0 0 0 266000 0 266000 Europe (Including Iceland & Greenland) Medical research 140000 Wire 0 Amount paid Europe (Including Iceland & Greenland) Medical research 26000 Wire 0 Amount paid East Asia and the Pacific Medical research 100000 Wire 0 Amount paid 2 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. Part III Accounting Method: Rustic Run 125432 94995 30437 2412 Walt Disney World Marathon Weekend 119088 115196 3892 17144 22740 8 701328 490521 210807 9881 1035 50283 115827 945848 700712 245136 9881 1035 67427 140979 219322 25814 1 University of Pennsylvania TRL Suite 1200 125 South 31st St Philadelphia PA 19104 231352685 501(c)(3) 14500 0 N/A N/A Medical Research Charles River Laboratories International Inc 251 Ballardvale Street Wilmington MA 01887 061397316 N/A 37055 0 N/A N/A Medical Research Mass General Brigham Incorporated 55 Fruit Street Boston MA 02114 042697983 501(c)(3) 42588 0 N/A N/A Medical Research Broad Institute 415 Main Street Cambridge MA 02142 263428781 501(c)(3) 81250 0 N/A N/A Medical Research Attune Neurosciences 3475 Edison Way Ste R Menlo Park CA 94025 833296298 N/A 200000 0 N/A N/A Medical Research The Johns Hopkins Hospital 1800 Orleans St Baltimore MD 21287 520591656 501(c)(3) 146468 0 N/A N/A Medical Research 4 2 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 145762 0 35000 0 0 0 0 0 14202 0 194964 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.