2024-11-12T10:01:56-07:00 2023-12-31 990 2023-01-01 823890665 ASXL RARE RESEARCH ENDOWMENT FOUNDATION ASXL 8455986359 PO Box 4662 Portland ME 04112 Daniel Ordower Treasurer 9179711262 2024-11-06 1 2023 2024-10-15 13:58:12Z Amanda Johnson PO Box 4662 Portland ME 04112 283786 0 X arrefoundation.org X 2018 ME A family-led organization that supports research to increase the understanding of the ASXL gene family and improve care for those living with ASXL Syndromes 5 5 1 50 0 0 222568 262982 5773 20286 175 518 0 0 228516 283786 67322 64616 0 0 110327 120152 0 0 25877 46947 44618 224596 229386 3920 54400 614250 668547 1357 1254 612893 667293 Support research and education that lead to improved quality of life for individuals with ASXL syndromes. 0 0 2850 0 0 ASXL Registry and Biobank. These are foundational tools based on patient data & samples which researchers will utilize to study and increase our knowledge of ASXL Syndromes 82157 55000 12434 Research grants. Effective research will bring an understanding of the underlying mechanisms and potential treatments for ASXL syndromes 60509 6116 20286 Conferences. Meetings to bring together professionals and families to share information and exchange ideas to further our mission. 11504 0 Create and provide patient and family educational resources 11504 0 0 157020 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 X 5 5 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 X Amanda Johnson 6073825109 PO Box 4662 Portland ME 04112 X Amanda Johnson Executive Director 40 0 X X 105900 0 0 Laura Badmaev President 5 0 X X 0 0 0 Daniel Ordower Treasurer 5 X X 0 0 0 Michael Salad Director 5 0 X 0 0 0 Julie Lopez Director 5 0 X 0 0 0 Lauren Adams Director 5 0 X 0 0 0 Sankar Madhavan 5 0 X 0 0 0 Amanda Scheier Director 5 0 X 0 0 0 105900 0 0 1 0 0 0 0 0 0 0 0 0 262982 0 262982 Conference registrations 813000 20286 20286 0 0 0 0 0 0 20286 518 518 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 283786 20804 0 0 0 0 5616 5616 59000 59000 0 0 105900 63540 21180 21180 0 6151 6151 8101 4861 1620 1620 10163 9413 750 5060 32 3218 1810 2002 44 1791 167 6909 5809 1100 2697 809 1888 13843 13705 138 1521 1521 Bank Fees 2423 0 2423 0 229386 157020 46489 25877 398864 570363 215287 72778 99 25406 614250 668547 1357 1254 1357 1254 X 522893 572293 90000 95000 612893 667293 614250 668547 54400 0 0 0 0 0 X 0 0 0 X 892224 95386 285640 228341 283268 1784859 892224 95386 285640 228341 283268 1784859 1240737 544122 4594 1953 453 175 518 7693 0 0 0 0 0 0 0 0 0 0 1792552 0.30355 0.2707 X The organization receives at least 30% public support, and has a continuous and bona-fide program for soliciting funds from the general public through annual appeals, conference registrations, and ongoing fundraising drives and has over 900 individual donors with an average donation amount of $50. Donors include a number of public non-profit organizations and government entities. The organization provides continuous research into cures, education into treatments and quality of life concerns, and conference services to a community of patients living with 3 different ultra-rare genetic disorders total less than 500 patients worldwide. The organization's board of directors is majority independent from the disqualified persons representing a wide-range of necessary volunteer skills and a broad cross-section of the overall constituency. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 Europe (including Iceland and Greenland) 0 0 Grantmaking Grants for medical and scientific research as well as individual grants for travel expenses and honoraria for researchers to attend scientific symposium in the United States. 59000 0 0 59000 Europe (including Iceland and Greenland) Research into establishing stem cells for research into ASXL related disorders 55000 wire funds 1 0 0 0 0 0 0 0 Schedule F, Part I, Line 2 Grantees must sign a grant agreement and must provide detailed reports on the use of all funds within 12 months of receiving funds. 1 Travel grant for young researchers to attend research symposium 3 2116 Speaking honoraria at research symposium 4 3500 Schedule I, Part I, Line 2 Grantees must submit a proposal, sign a grant contract, and provide detailed report on use of funds and progress toward goals within 12 months of receiving grant. Progress is monitored by a Medical and Scientific Advisory Board. Form 990, Part VI, Section B, Line 11b Treasurer completes the 990, executive director and board review 990 in entirety, compare with the financial statements and approve. Form 990, Part VI, Section B, Line 12c Directors are required to review the conflict of interest policy each year and reaffirm compliance. Form 990, Part VI, Section B, Line 15 Executive committee of the Board of Directors reviews Executive Director performance each year and assesses compensation on an annual basis compared with compensation packages of other similarly situated organizations. Form 990, Part VI, Section C, Line 19 All documents are available upon request to donors and constituents by calling or emailing the office. This organization relies heavily on family volunteers and volunteer experts including filing of the Form 990. Our treasurer is also the caregiver for a patient with one of our communities' ultra-rare disorders. The treasurer's son was admitted to the hospital during the window to file the extension for the 990 and did not attempt to filing the extension until 2 days after the deadline. The electronic extension request was denied by the automated system. This return is being filed within the proper 6 month automatic filing extension window.