Liabilities / Assets
56th percentile
Tied with the lowest-debt nonprofits in its peer group.
990EZ • Fiscal year 2021 • EIN 20-4915307
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
56th percentile
Tied with the lowest-debt nonprofits in its peer group.
Liabilities / Revenue
56th percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
51st percentile
Higher net margin than 51% of similar nonprofits.
Top Officer Pay
77th percentile
Higher top officer pay than 77% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
76th percentile
Faster asset growth than 76% of similar nonprofits.
Revenue Growth
85th percentile
Faster revenue growth than 85% of similar nonprofits.
Assets
$101,771
No earlier filing loaded for comparison.
Net Assets
$101,771
No earlier filing loaded for comparison.
Liabilities
$0
No earlier filing loaded for comparison.
Revenue
$89,952
No earlier filing loaded for comparison.
Expenses
$81,308
No earlier filing loaded for comparison.
Net Income
$8,644
No earlier filing loaded for comparison.
Rare Disease Organization. The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.
| Description | Grants | Expenses |
|---|---|---|
| TASK FORCE grants paid out for the working groups for the Guidelines Project for Autoinflammatory Diseases to develop diagnosis, care and treatment guidelines with consensus working groups, meeting virtually for Il-1 mediated and interferon-mediated diseases, and in line with the EULAR protocol and grant plan. Our organization paid for this project, but will be reimbursed in 2022 for most of these grant expenses per their grant that was set up with the Task Force leadership. These guidelines will be published and will have the endorsement of ACR and EULAR in 2022 when completed, and help medical professionals to be able to better care for patients with these rare diseases. Please see the grants details for this 990EZ part 1 line 10 section 0 for full details on the grant payments, institutions paid and other details about the project. | $41,730 | $0 |
| International Autoinflammatory Awareness Month 2021 expenses for two global, translated online programs with medical experts and patient advocates that had live translation, with recorded translation, and recorded programs to put online to share later. No cost to attendees. We had hundreds of medical professionals and patients from over 25 countries registered and attending the programs. The major costs were large zoom meeting hosting and translation into many languages for each program. People from 92 countries visited our dedicated website for International Autoinflammatory Awareness Month in August (autoinflammatorymonth.org). We also had building lighting in various parts of the US and the world, and an in-person event hosted by local patients at the Union Station, Kansas City, MO building lighting with food, freebies and items from our org for all attendees. In addition, we had a special "Shine a Light for Autoinflammatory Diseases" set of videos made, and awareness kits packed with fulfillment to get kits out to hundreds of patients, caregivers and medical professionals to have items to help them to raise awareness where they live, and submit their videos and photos that were used in the closing ceremony program to help raise awareness. The items and shipping were the main cost, but we received donations to help offset the costs. We had 31+ participating organizations (no charge to be involved, and no cost to them) to be a part of supporting the awareness month from around the world. We supplied items for use globally by patients and other organizations and medical professionals, and extra items that were left over will be used for 2022. $688.70 total was spent to promote all the events, awareness videos and other promotion for the programs (free for all to attend) through social media promotional methods. | $0 | $31,053 |
| General operating expenses, business insurance ($325), NORD membership ($75), state filings, web hosting, blog, patient and medical professional resources online, and virtual attendance to conferences ($773.37) that our research was being presented was $7337.53 in 2021 ($715.10 for basic shipping for the org, PO box, stamps, etc was NOT included in this sum as that was listed separately.) Our org is volunteer led, and run out of the home where the president of the org lives, and her family donates all use in the home, internet, phone for free, so these expenses are mostly for websites, domains, blog site, wordpress security and add ons needed, software, zoom, office 365, adobe CS, and other needed software, printer ink. | $0 | $7,338 |
| Patient-focused research on the impact of COVID-19 for patients with autoinflammatory diseases, and their families, via an anonymous, international survey and promotion in early 2021. $472.00 included a year of surveymonkey professional level and some social media promotion to gather hundreds of submissions from patients and caregivers. This survey data has led to the research being presented at leading medical conferences and in abstracts, and shared with the patient community. A full publication is being worked on with this data for submission in 2022, and a second survey is being developed to get more insights on more recent COVID-19 patient experiences post vaccine, and with other variants of the virus. This research was the largest known survey data set on autoinflammatory disease patients in regards to COVID-19, and there is very little published data on the effects and complications of COVID-19 on autoinflammatory patients, or the impact of the early pandemic sheltering in place and changes in disease activity, so this research has had a big impact. | $0 | $472 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Karen Durrant | Rn, President, Founder, Director, Research Lead, Patient Group Admin And Board Member | PT | $0 | - | - |
| Nathan Durrant | Secretary/Treasurer, Graphic Pr Lead, Board Member | PT | $0 | - | - |
| Dorelia Rivera | Vice President, Patient Advocate, Policy Lead, Caps Patient Group Moderator, Board Member | PT | $0 | - | - |
| Jennifer Tousseau | Blog Editor, Patient Groups Lead Admin, Patient Advocate, Research Team, Outreach, Board Member | PT | $0 | - | - |
| Katie Bailey | Rn, Patient Advocate, Patient Group Admin, Outreach, Event Committee, Board Member | PT | $0 | - | - |
| Saskya Angevare | Eu Patient Representative, Patient Group Moderator, Research Team, Advocacy, Policy, Board Member | PT | $0 | - | - |
| Colleen Paduani | Lvn, Caps Patient Group Moderator, Events & Policy Committees, Rare Patient Advocacy, Board Member | PT | $0 | - | - |
| Erin Wilson | Military Patients/ Families Advocate, Outreach, Events, Fundraising, Board Member, | PT | $0 | - | - |
| Carla Herbert | Rare Patient Advocate, Policy, Events Committees, Board Member | - | $0 | - | - |
| Heather Briganti | Pr Committee Lead, Rare Patient Advocacy, Outreach, Board Member | - | $0 | - | - |
| Julie Cunningham | Rare Disease Patient Advocacy, Events, Outreach, Board Member | - | $0 | - | - |
| Seth Durrant | Volunteer Moderator & Manager Of The Youth Patient Group, Manages Minecraft Youth Org Private Server | - | $0 | - | - |
“Grant and fellowship payments were all made by our organization for the Interferon-Mediated and Il-1 Mediated Task Force Working Group Research project per the EULAR grant terms. Our org had to pay all the fellowship and grants for these research "points to consider" consensus guidelines project to be finalized, submitted for publication, and then we were to be reimbursed after the project was finalized and approved for medical journal publication in 2022 for the fellowship and research grant pre-set amounts by the European Alliance of Associations for Rheumatology (EULAR). A small portion of the grants made by our org, in addition to the EULAR grant to fund research associated with this project are not going to be reimbursed by EULAR in 2022. Dr Erkan Demirkaya MD, Western University Bone and Joint Institute, London, Ontario, Canada was the lead for the Task Force and EULAR grant effort, and directly managed all the fellows, that were working at Western University, and the majority of the grant funds were paid directly to that institution. A few fellows had finished their fellowship by the time of the funding for the grant from our institution, so we worked with the Task Force leaders on how to manage those costs, and payments were made to institutions via wise.com or wire transfers. Fellows being supported by the EULAR grant proposal grant amounts were either 4000 EURO (in USD or CAD) for the fellowships with the Interferon-mediated task force (3 diseases), or 5000 EURO (in USD or CAD) for the Il-1 mediated task force, as there were more diseases, and a lot more research papers and meetings for the Il-1 mediated Task Force project. The Autoinflammatory Alliance submitted all the receipts for the project to EULAR and received reimbursement under their grant plan in 2022.”
“Our org usually only needs to do the e-postcard, which we have filed on time, and regularly yearly, but we are doing the 990 for more disclosure. These other expenses includes all bank and wire transfer fees, state and federal charity filing costs, a $100 late filing fee for the state of IL, insurance for the org, NORD membership dues, conference fees (all virtual, and conferences that our research was being presented at, plus to learn about new findings so we could then inform our patient communities. Basic operating expenses, web hosting, blog, zoom, software, costs for other research efforts, Autoinflammatory Awareness Month virtual programs, translation, recordings, in-person events and awareness kit materials, packing and distribution to patients, doctors and others. Donations helped to offset costs for all the awareness month events and items sent to patients. ExpenseFulfillment/distribution costs are included in this sum, separate from our basic org shipping costs, as it was a special project program.”
“$16,819.85 DOGE end 2021 value DOGE= 0.170496 12/31/21. Our org has 98652.44736107 Dogecoin. Plus $7686.87 BTC end 2021 value 1 BTC= 46306.45 12/31/21. Our org has 0.166 BTC. So, $24,506.72 total crytocurrency assets end value 12/31/21= $24,506.72. The end 2020 total value was $5095.07, so the end value of the cryptocurrency 12/31/21 was a+$19,411.65 increase in asset from 2020 to 2021. No cryptocurrency has been sold, or donated to our org in 2021.”
“$16,819.85 DOGE end 2021 value DOGE= 0.170496 12/31/21. Our org has 98652.44736107 Dogecoin. Plus $7686.87 BTC end 2021 value 1 BTC= 46306.45 12/31/21 Our org has 0.166 BTC. So, $24,506.72 total crytocurrency assets end value 12/31/21= $24,506.72. The end 2020 total value was $5095.07, so the end value of the cryptocurrency 12/31/21 was a+$19,411.65 increase in asset from 2020 to 2021. No cryptocurrency has been sold, or donated to our org in 2021.”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
| IRS990EZ/ActivitiesNotPreviouslyRptInd | 0 | 0 |
| IRS990EZ/BenefitsPaidToOrForMembersAmt | 0 | 0 |
| IRS990EZ/BooksInCareOfDetail/PersonNm | 0 | Karen and Nathan Durrant |
| IRS990EZ/BooksInCareOfDetail/PhoneNum | 0 | 4158318782 |
| IRS990EZ/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | PO Box 590354 |
| IRS990EZ/BooksInCareOfDetail/USAddress/CityNm | 0 | San Francisco |
| IRS990EZ/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | CA |
| IRS990EZ/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 94159 |
| IRS990EZ/CashSavingsAndInvestmentsGrp/BOYAmt | 0 | 68620 |
| IRS990EZ/CashSavingsAndInvestmentsGrp/EOYAmt | 0 | 77264 |
| IRS990EZ/ChgMadeToOrgnzngDocNotRptInd | 0 | 0 |
| IRS990EZ/ContributionsGiftsGrantsEtcAmt | 0 | 89949 |
| IRS990EZ/CostOfGoodsSoldAmt | 0 | 0 |
| IRS990EZ/CostOrOtherBasisExpenseSaleAmt | 0 | 0 |
| IRS990EZ/DirectIndirectPltclExpendAmt | 0 | 0 |
| IRS990EZ/DonorAdvisedFndsInd | 0 | 0 |
| IRS990EZ/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990EZ/ExcessOrDeficitForYearAmt | 0 | 8644 |
| IRS990EZ/FeesAndOtherPymtToIndCntrctAmt | 0 | 578 |
| IRS990EZ/FiledScheduleAInd | 0 | 1 |
| IRS990EZ/ForeignFinancialAccountInd | 0 | 0 |
| IRS990EZ/ForeignOfficeInd | 0 | 0 |
| IRS990EZ/Form1120PolFiledInd | 0 | 0 |
| IRS990EZ/Form990TotalAssetsGrp/BOYAmt | 0 | 73715 |
| IRS990EZ/Form990TotalAssetsGrp/EOYAmt | 0 | 101771 |
| IRS990EZ/FundraisingGrossIncomeAmt | 0 | 0 |
| IRS990EZ/GainOrLossFromSaleOfAssetsAmt | 0 | 0 |
| IRS990EZ/GamingGrossIncomeAmt | 0 | 0 |
| IRS990EZ/GrantsAndSimilarAmountsPaidAmt | 0 | 41730 |
| IRS990EZ/GrossProfitLossSlsOfInvntryAmt | 0 | 0 |
| IRS990EZ/GrossReceiptsAmt | 0 | 89952 |
| IRS990EZ/GrossSalesOfInventoryAmt | 0 | 0 |
| IRS990EZ/InfoInScheduleOPartIIInd | 0 | X |
| IRS990EZ/InfoInScheduleOPartIInd | 0 | X |
| IRS990EZ/InvestmentIncomeAmt | 0 | 3 |
| IRS990EZ/LandAndBuildingsGrp/BOYAmt | 0 | 0 |
| IRS990EZ/LandAndBuildingsGrp/EOYAmt | 0 | 0 |
| IRS990EZ/LobbyingActivitiesInd | 0 | 0 |
| IRS990EZ/MadeLoansToFromOfficersInd | 0 | 0 |
| IRS990EZ/MembershipDuesAmt | 0 | 0 |
| IRS990EZ/MethodOfAccountingCashInd | 0 | X |
| IRS990EZ/NetAssetsOrFundBalancesBOYAmt | 0 | 73715 |
| IRS990EZ/NetAssetsOrFundBalancesEOYAmt | 0 | 101771 |
| IRS990EZ/NetAssetsOrFundBalancesGrp/BOYAmt | 0 | 73715 |
| IRS990EZ/NetAssetsOrFundBalancesGrp/EOYAmt | 0 | 101771 |
| IRS990EZ/OccupancyRentUtltsAndMaintAmt | 0 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 0 | 30 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 1 | 5 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 2 | 5 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 3 | 25 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 4 | 5 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 5 | 5 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 6 | 5 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 7 | 5 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 8 | 2 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 9 | 2 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 10 | 1 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 11 | 1 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 0 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 1 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 2 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 3 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 4 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 5 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 6 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 7 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 8 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 9 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 10 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 11 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 0 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 1 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 2 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 3 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 4 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 5 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 6 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 7 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 8 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 9 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 10 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 11 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 0 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 1 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 2 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 3 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 4 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 5 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 6 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 7 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 8 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 9 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 10 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt | 11 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 0 | Karen Durrant |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 1 | Nathan Durrant |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 2 | Dorelia Rivera |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 3 | Jennifer Tousseau |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 4 | Katie Bailey |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 5 | Saskya Angevare |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 6 | Colleen Paduani |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 7 | Erin Wilson |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 8 | Carla Herbert |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 9 | Heather Briganti |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 10 | Julie Cunningham |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm | 11 | Seth Durrant |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 0 | RN, president, founder, director, research lead, patient group admin and board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 1 | secretary/treasurer, graphic PR lead, Board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 2 | Vice President, patient advocate, policy lead, CAPS patient group moderator, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 3 | Blog editor, patient groups lead admin, patient advocate, research team, outreach, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 4 | RN, patient advocate, patient group admin, outreach, event committee, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 5 | EU patient representative, patient group moderator, research team, advocacy, policy, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 6 | LVN, CAPS patient group moderator, events & policy committees, rare patient advocacy, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 7 | Military patients/ families advocate, outreach, events, fundraising, board member, |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 8 | Rare patient advocate, policy, events committees, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 9 | PR committee lead, rare patient advocacy, outreach, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 10 | Rare Disease patient advocacy, events, outreach, board member |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 11 | volunteer moderator & manager of the youth patient group, manages Minecraft youth org private server |
| IRS990EZ/OperateHospitalInd | 0 | 0 |
| IRS990EZ/Organization501c3Ind | 0 | X |
| IRS990EZ/OrganizationDissolvedEtcInd | 0 | 0 |
| IRS990EZ/OrganizationHadUBIInd | 0 | 0 |
| IRS990EZ/OtherAssetsTotalDetail/BOYAmt | 0 | 5095 |
| IRS990EZ/OtherAssetsTotalDetail/EOYAmt | 0 | 24507 |
| IRS990EZ/OtherChangesInNetAssetsAmt | 0 | 19412 |
| IRS990EZ/OtherExpensesTotalAmt | 0 | 38285 |
| IRS990EZ/OtherRevenueTotalAmt | 0 | 0 |
| IRS990EZ/PartVIHghstPdCntrctProfSrvcTxt | 0 | NONE |
| IRS990EZ/PartVIOfCompOfHghstPdEmplTxt | 0 | NONE |
| IRS990EZ/PoliticalCampaignActyInd | 0 | 0 |
| IRS990EZ/PrimaryExemptPurposeTxt | 0 | Rare Disease Organization. The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. |
| IRS990EZ/PrintingPublicationsPostageAmt | 0 | 715 |
| IRS990EZ/ProgramServiceRevenueAmt | 0 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 0 | TASK FORCE grants paid out for the working groups for the Guidelines Project for Autoinflammatory Diseases to develop diagnosis, care and treatment guidelines with consensus working groups, meeting virtually for Il-1 mediated and interferon-mediated diseases, and in line with the EULAR protocol and grant plan. Our organization paid for this project, but will be reimbursed in 2022 for most of these grant expenses per their grant that was set up with the Task Force leadership. These guidelines will be published and will have the endorsement of ACR and EULAR in 2022 when completed, and help medical professionals to be able to better care for patients with these rare diseases. Please see the grants details for this 990EZ part 1 line 10 section 0 for full details on the grant payments, institutions paid and other details about the project. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 1 | International Autoinflammatory Awareness Month 2021 expenses for two global, translated online programs with medical experts and patient advocates that had live translation, with recorded translation, and recorded programs to put online to share later. No cost to attendees. We had hundreds of medical professionals and patients from over 25 countries registered and attending the programs. The major costs were large zoom meeting hosting and translation into many languages for each program. People from 92 countries visited our dedicated website for International Autoinflammatory Awareness Month in August (autoinflammatorymonth.org). We also had building lighting in various parts of the US and the world, and an in-person event hosted by local patients at the Union Station, Kansas City, MO building lighting with food, freebies and items from our org for all attendees. In addition, we had a special "Shine a Light for Autoinflammatory Diseases" set of videos made, and awareness kits packed with fulfillment to get kits out to hundreds of patients, caregivers and medical professionals to have items to help them to raise awareness where they live, and submit their videos and photos that were used in the closing ceremony program to help raise awareness. The items and shipping were the main cost, but we received donations to help offset the costs. We had 31+ participating organizations (no charge to be involved, and no cost to them) to be a part of supporting the awareness month from around the world. We supplied items for use globally by patients and other organizations and medical professionals, and extra items that were left over will be used for 2022. $688.70 total was spent to promote all the events, awareness videos and other promotion for the programs (free for all to attend) through social media promotional methods. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 2 | Patient-focused research on the impact of COVID-19 for patients with autoinflammatory diseases, and their families, via an anonymous, international survey and promotion in early 2021. $472.00 included a year of surveymonkey professional level and some social media promotion to gather hundreds of submissions from patients and caregivers. This survey data has led to the research being presented at leading medical conferences and in abstracts, and shared with the patient community. A full publication is being worked on with this data for submission in 2022, and a second survey is being developed to get more insights on more recent COVID-19 patient experiences post vaccine, and with other variants of the virus. This research was the largest known survey data set on autoinflammatory disease patients in regards to COVID-19, and there is very little published data on the effects and complications of COVID-19 on autoinflammatory patients, or the impact of the early pandemic sheltering in place and changes in disease activity, so this research has had a big impact. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 3 | General operating expenses, business insurance ($325), NORD membership ($75), state filings, web hosting, blog, patient and medical professional resources online, and virtual attendance to conferences ($773.37) that our research was being presented was $7337.53 in 2021 ($715.10 for basic shipping for the org, PO box, stamps, etc was NOT included in this sum as that was listed separately.) Our org is volunteer led, and run out of the home where the president of the org lives, and her family donates all use in the home, internet, phone for free, so these expenses are mostly for websites, domains, blog site, wordpress security and add ons needed, software, zoom, office 365, adobe CS, and other needed software, printer ink. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/ForeignGrantsInd | 0 | X |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt | 0 | 41730 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt | 1 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt | 2 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt | 3 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt | 0 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt | 1 | 31053 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt | 2 | 472 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt | 3 | 7338 |
| IRS990EZ/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990EZ/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990EZ/SalariesOtherCompEmplBnftAmt | 0 | 0 |
| IRS990EZ/SaleOfAssetsGrossAmt | 0 | 0 |
| IRS990EZ/SchoolOperatingInd | 0 | 0 |
| IRS990EZ/SpecialEventsDirectExpensesAmt | 0 | 0 |
| IRS990EZ/SpecialEventsNetIncomeLossAmt | 0 | 0 |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 0 | AK |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 1 | AL |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 2 | AR |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 3 | AS |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 4 | AZ |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 5 | CA |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 6 | CO |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 7 | CT |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 8 | DE |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 9 | FL |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 10 | GA |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 11 | HI |
| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 12 | IA |
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| IRS990EZ/StatesWhereCopyOfReturnIsFldCd | 14 | IL |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | Grant and fellowship payments were all made by our organization for the Interferon-Mediated and Il-1 Mediated Task Force Working Group Research project per the EULAR grant terms. Our org had to pay all the fellowship and grants for these research "points to consider" consensus guidelines project to be finalized, submitted for publication, and then we were to be reimbursed after the project was finalized and approved for medical journal publication in 2022 for the fellowship and research grant pre-set amounts by the European Alliance of Associations for Rheumatology (EULAR). A small portion of the grants made by our org, in addition to the EULAR grant to fund research associated with this project are not going to be reimbursed by EULAR in 2022. Dr Erkan Demirkaya MD, Western University Bone and Joint Institute, London, Ontario, Canada was the lead for the Task Force and EULAR grant effort, and directly managed all the fellows, that were working at Western University, and the majority of the grant funds were paid directly to that institution. A few fellows had finished their fellowship by the time of the funding for the grant from our institution, so we worked with the Task Force leaders on how to manage those costs, and payments were made to institutions via wise.com or wire transfers. Fellows being supported by the EULAR grant proposal grant amounts were either 4000 EURO (in USD or CAD) for the fellowships with the Interferon-mediated task force (3 diseases), or 5000 EURO (in USD or CAD) for the Il-1 mediated task force, as there were more diseases, and a lot more research papers and meetings for the Il-1 mediated Task Force project. The Autoinflammatory Alliance submitted all the receipts for the project to EULAR and received reimbursement under their grant plan in 2022. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Our org usually only needs to do the e-postcard, which we have filed on time, and regularly yearly, but we are doing the 990 for more disclosure. These other expenses includes all bank and wire transfer fees, state and federal charity filing costs, a $100 late filing fee for the state of IL, insurance for the org, NORD membership dues, conference fees (all virtual, and conferences that our research was being presented at, plus to learn about new findings so we could then inform our patient communities. Basic operating expenses, web hosting, blog, zoom, software, costs for other research efforts, Autoinflammatory Awareness Month virtual programs, translation, recordings, in-person events and awareness kit materials, packing and distribution to patients, doctors and others. Donations helped to offset costs for all the awareness month events and items sent to patients. ExpenseFulfillment/distribution costs are included in this sum, separate from our basic org shipping costs, as it was a special project program. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | $16,819.85 DOGE end 2021 value DOGE= 0.170496 12/31/21. Our org has 98652.44736107 Dogecoin. Plus $7686.87 BTC end 2021 value 1 BTC= 46306.45 12/31/21. Our org has 0.166 BTC. So, $24,506.72 total crytocurrency assets end value 12/31/21= $24,506.72. The end 2020 total value was $5095.07, so the end value of the cryptocurrency 12/31/21 was a+$19,411.65 increase in asset from 2020 to 2021. No cryptocurrency has been sold, or donated to our org in 2021. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | $16,819.85 DOGE end 2021 value DOGE= 0.170496 12/31/21. Our org has 98652.44736107 Dogecoin. Plus $7686.87 BTC end 2021 value 1 BTC= 46306.45 12/31/21 Our org has 0.166 BTC. So, $24,506.72 total crytocurrency assets end value 12/31/21= $24,506.72. The end 2020 total value was $5095.07, so the end value of the cryptocurrency 12/31/21 was a+$19,411.65 increase in asset from 2020 to 2021. No cryptocurrency has been sold, or donated to our org in 2021. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990-EZ, Part I, Line 10 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990-EZ, Part I, Line 16 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990-EZ, Part I, Line 20 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990-EZ, Part II, Line 24 |
| ReasonableCauseExplanation/ExplanationTxt | 0 | We filed our 990 E-postcard on time, as we usually do not make over $50,000 in donations. But we file a 990EZ for transparency and for state filings. Please note that in 2019, I should have listed some of our contributions as "large grants" but I put them into the section A line 1 all as donations, but we generally do not raise over $50,000 a year. We got some larger donations this year too. So, this 990EZ is additional documentation for our org filing. There were medical complications going on in May and the president was on medical leave as well, so we did not get this done until June, but there should not be a penalty since we are normally required to do a e- postcard only, and did that on time. Thank you. |
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| ReturnHeader/BuildTS | 0 | 2022-09-23 18:48:47Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Karen Durrant |
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| ReturnHeader/ReturnTs | 0 | 2022-06-07T21:53:31-07:00 |
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| ReturnHeader/TaxPeriodBeginDt | 0 | 2021-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2021-12-31 |
| ReturnHeader/TaxYr | 0 | 2021 |
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Displayed year
2021 • Form 990EZDetailed filing. Detailed filing data is available for this year.
| Balance Sheet | Operations | |||||
|---|---|---|---|---|---|---|
| Year | Assets | Liabilities | Net Assets | Revenue | Expenses | Net Income |
| 2024Detailed filing. Detailed filing data is available for this year. | $1.17 | $0.00 | $1.17 | $0.55 | $0.19 | $0.37 |
| 2022Detailed filing. Detailed filing data is available for this year. | $1.36 | $0.00 | $1.36 | $0.93 | $0.43 | $0.49 |
| 2021Detailed filing. Detailed filing data is available for this year. | $1.02 | $0.00 | $1.02 | $0.90 | $0.81 | $0.09 |