2026-07-03T12:36:06-07:00 2025-12-31 990EZ 2025-01-01 204915307 AUTOINFLAMMATORY ALLIANCE INC AUTO 4158318782 PO Box 590354 San Francisco CA 94159 Karen Durrant President 4158318782 2026-07-02 2025 2025-03-06 01:10:19Z X https://autoinflammatory.org X X 67906 X 26984 0 0 3 0 0 0 0 40919 4914 36005 0 0 0 0 62992 25500 0 0 0 0 677 12479 38656 24336 117071 -15598 125809 X 69323 98991 0 0 47748 26818 117071 125809 0 0 117071 125809 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. This includes supporting appropriate research and programs that will improve the lives of patients. A main focus of our nonprofit is to be a free resource online and print for education for patients and medical professionals.This includes hosting and coordinating efforts for International Autoinflammatory Awareness Month, Rare Disease Day, and research collaborations. We are also fundraising online to support for the 2026 3rd NIH Autoinflammatory and Immunedysregulatory Diseases Symposium, DLK evening reception. Plus a Task Force Working group to work on Clinical Trial Modular Outcome Measures to improve future treatment clinical trial design that is tailored to rare autoinflammatory and immunedysregulatory diseases to make a positive change for research and treatment for patients. Our costs for the hosting, plug-ins, domains, SSL certificates, managed hosting for 4 websites and subdomains, and materials in print, mailed to those in need at no cost, or to download online for free are a part of our operating budget yearly. Costs for autoinflammatory.org and the subdomains for our main site, that also includes downloadable information. We also have saidsupport.org, which is a leading source of information in a blog format based on covering common questions we get from patients and medical professionals, plus other resources, advocacy and engagement, patient stories and more to help patients and caregivers to better understand and become empowered to manage these complex, rare diseases. We also host the official International Autoinfammatory Awarness Month site at autoinflammatorymonth.org to feature global events, upcoming events and activities for engagement and awareness. Also, autoinflammatory-search.org is a leading resource for medical professionals to compare and consider the features of various autoinflammatory disease symptoms and findings, which has expert medical editors for these diseases. Our main website and this search database need to be updated and improved in 2026 to cover some of the more newly classified diseases. We also participate, and support a lot of research The total costs for this outreach to support education, awareness and research efforts from our org in 2025 was $10,168.79 0 10169 Patient advocacy and international patient advocacy, including research representation and collaboration meetings. Karen Durrant RN, BSN-President of the Autoinflammatory Alliance is also the unpaid patient organizations representative for the International Society of Systemic Autoinflammatory Diseases (ISSAID.) Karen had to attend and assist as a patient advocate and member of the ISSAID steering committee for the April 2025 ISSAID Paris Congress to participate and speak at a patient program hosted by French organizations, and also attend ISSAID to participate in programs there, some research meetings in concurrent sessions to advocate for patient needs, and get the latest updates to share to our patient community on autoinflammatory and immunedysregulatory diseases at the congress. In addition, Karen represented patients in other advocacy roles throughout the year virtually, or in person as a part of the Childhood Arthritis Rheumatology and Research Aliance (CARRA), ISSAID, the Translational Autoinflammatory Disease Network (TARN), and the Unite4Rare Global Council (all unpaid-no money or stipends go to Karen Durrant-any funds, if offered are directly paid to the Autoinflammatory Alliance.) 0 2748 Supporting Autoinflammtory Disease Research with innovative research for unmet needs. The Autoinflammatory Alliance has fundraised and worked with our scientific advisors, and also our patient community and families that have done fundraising to help determine the right programs to support for advancing care and research for systemic autoinflammatory diseases. In 2025, we were able to find the right program at the NIH NIAID Translational Autoinflammatory Research Institute Gift Fund to support research for the severe form of CAPS, including NOMID/CINCA and the new complications affecting some patients with all forms of CAPS globally that are experiencing amyloidosis induced by one of the few, or only medication to treat their form of CAPS-especially for NOMID patients that need this medication to get to the brain. The medication-induced amyloidosis is a new, and concerning issue that has been found to not only cause some lumps and tissue issues in the injection sites that can start to grow enormous in some cases, but a few are developing life limiting systemic medication induced amyloidosis. $18,000 was donated to the NIAID TARI gift fund in 2025 to directly support the research study to develop a new scanning method to check patients for this amyloidosis to see if it is in the tissues and organs in the body, since it is otherwise impossible to biopsy randomly internal organs, or all over the skin at multiple sites without a risk to patients. This scanner and future new medication trials to find another drug to treat these patients instead of this current one causing this issue were supported with this grant. In addition, $7500 was donated to start the TNFAIP3 HA20 Registry with NORD and the University of Pittsburgh, which is needed to better understand the many forms and issues that this more newly discovered disease can cause. We paid this money in 2025, and received a reimbursement for the money in 2026 from the University of Pittsburgh once they received their grant funds, and we had established this as a NORD member org. This registry will be finalized in 2026, and there will be some ongoing costs that we will support and receive some reimbursement. We are a NORD member org, and this registry with IAMRARE must be done in collaboration with researchers, our scientific advisors, and NORD, along with U Pitt researchers. These funds are being used strictly for this registry, and not financially benefitting any scientific advisor or board member of the Autoinflammatory Alliance. Total grants paid out for research in 2025= $25,500. 25500 0 12917 Karen Durrant RN, president, founder, director, research lead, patient group admin and board member 15 0 0 0 Nathan Durrant secretary/treasurer, graphic PR lead, Board member 2 0 0 0 Dorelia Rivera Vice President, patient advocate, policy lead, CAPS patient group moderator, board member 2 0 0 0 Jennifer Tousseau Blog editor, patient groups lead admin, patient advocate, research team, outreach, board member 12.00 0 0 0 Katie Bailey RN, patient advocate, patient group admin, outreach, event committee, board member 2 0 0 0 Saskya Angevare EU patient representative, patient group moderator, research team, advocacy, policy, board member 1 0 0 0 Colleen Paduani CAPS patient group moderator, events & policy committees, rare patient advocacy, board member 2 0 0 0 Erin Wilson Military patients/ families advocate, outreach, events, fundraising, board member, 1 0 0 0 Carla Herbert Rare patient advocate, policy, events committees, board member 1 0 0 0 Heather Briganti PR committee lead, rare patient advocacy, outreach, board member 1 0 0 0 Julie Cunningham Rare Disease patient advocacy, events, outreach, board member 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 AK AL AR AZ CA CO CT DC DE FL GA HI IA ID IL IN KS KY LA MA MD ME MI MN MO MS MT NC ND NE NH NJ NM NV NY OH OK OR PA RI SC SD TN TX VA VT WA WI WV WY Karen and Nathan Durrant PO Box 590354 San Francisco CA 94159 4158318782 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 89949 51851 21953 29640 62992 256385 0 0 0 0 0 0 0 0 0 0 0 0 89949 51851 21953 29640 62992 256385 4872 251513 3 10 46 3 3 65 0 0 0 0 0 0 0 0 0 0 0 0 256450 0 0.98075 0.99972 X Schedule A, Part I, Line 10 grants of $25,500 were made by the Autoinflammatory Alliance in 2025 to support autoinflammatory research programs, and are discussed in detail in the accomplishments for the organization. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1st Annual Emmett's Eagles-Putting for a Purpose Golf Fundraiser 30073 0 30073 0 550 1540 150 300 1354 Blue Hills: 5th Annual Come Shine a Light w/ Charley for Autoinflammatory Diseases 10846 0 10846 0 0 0 636 0 0 0 40919 0 40919 0 550 1540 786 300 1354 4530 36389 Schedule G, Part I, Line 2b(iv) We had 2 major in-person fundraising events during International Autoinflammatory Awareness Month in August of 2025. These were events to raise awareness, and fundraise for research. Emmett's 1st Annual Putting for A Cure was held at the Golf Factory in Mt Prospect, IL and there was a lot of donations and sponsors that covered most of the food costs which we were not charged for at all. People did indoor golf, and there were some in-kind donations of lego sets and gift cards and other items. The 5th Annual Shine A Light for Charley event was in Kansas at a Country Club that hosted the event for no charge, except for the food. People made donations to attend the events, and made extra donations. There were many extra donations from various large donors for both events. The only paid staff were at the venues, food servie and the DJ at Emmet's Putting for a Cure. The events for our organization were organized by the amazing volunteers Ellen and Becca, and their friends and family. Research funds raised were donated to directly support research and scientific programs in 2026, with the input of our board, medical advisors and the parents that led these fundraisers. We are very appreciative for all that have donated, attended, sponsored and volunteered for these, and other efforts to support research and our organization. Schedule G, Part II, Line 1 Donations for events came as checks, payments on givebutter, or our Autoinflammatory Alliance venmo or paypal accounts. Givebutter sent us a 1099-K with a total gross on line 1a for $26250.23 in transactions through their portal for donations that was used for these 2 events. Form 990-EZ, Part I, Line 10 Funds raised in 2025 donated in 2026 to research. Will be on 2026 IRS 990. Form 990-EZ, Part I, Line 16 Program expenses explanation. All computer, internet, phone, space for org supplies donated by the Durrant Family due to the nonprofit being run from their home, so those costs are 0 on the form. Other expenses include: Website, domains, managed web hosting, server hosting, SSL certificates, other domains that are parked for future use, software like Office 365, Adobe, Zoom, Surveymonkey, and others needed for the org. Also, costs for some website plugins for wordpress for our saidsupport.org blog, autoinflammatorymonth.org, and other costs for all our websites to be hosted and maintained by the server companies. We do not have any paid staff-all are volunteers. Some expenses for travel and lodging (at a budget hotel) to and from Paris for the April ISSAID 2025 Autoinflammatory Congress. $12,478.64 total other expenses. Form 990-EZ, Part I, Line 20 We have 0.166 BTC valued on 12/31/25 at $14,665. 98652.44736107 DOGE valued on 12/31/25 at $12,036. Plus on 12/31/25 our Bitcoin gold 0.19577283 valued at $116.52 and Bitcoin Cash was valued at $0.123. The total value for these assets on 12/31/2025 was $26,817.64. on 12/31/2024 the value was 47748 as seen on the 2024 990 EZ. So we have a loss of -$20,930.36 on this asset at the end of 2025. $5332 additional funds from 2024 are being accounted for in 2025 in this section as an asset, as they were put in 2024 into a storage wallet in Givebutter, and not into our bank directly due to changes in their system. The fundraising money was all accounted for in 2024, but this amount was accidentally not added into the end balance of accounts, due to the changes in the Givebutter system for funds raised being dispersed differently towards the end of the 2024, and we were new to using this platform for events too. We had been using Mightycause, and still do, which does monthly payments into our bank. In 2025 we transferred a lot of the funds from Givebutter (20,000) to our regular bank account, but we left some funds in a Givebutter Stripe Higher Yield Stripe account, so $5332 is an asset this year to adjust for this prior year. -$20,930.36 loss for cryptocurrency from 2024-25 + $5332 funds in the givebutter higher yield wallet becomes a total 2025 change in asset amount of -15,598.36 Our end of 2025 bank accounts, Givebutter, Paypal, Venmo and Mightycause are accurate to the penny to all these account end year balance statements, but this had to be noted as an asset adjustment in 2025. Form 990-EZ, Part II, Line 24 We have held crytocurrency since 2014 that was given to our organization as a donation. We have not collected any new cryptocurrency forms for many years. The Bitcoin Cash and Bitcoin gold were accrued later from the original Bitcoin donation due to some Bitcoing changes years ago. The Autoinflammatory Alliance has 0.166 BTC valued on 12/31/25 at $14,665. 98652.44736107 DOGE valued on 12/31/25 at $12,036. Plus on 12/31/25 our Bitcoin gold 0.19577283 valued at $116.52 and Bitcoin Cash was valued at $0.123. The total value for these assets on 12/31/2025 was $26,817.64. on 12/31/2024 the value was 47748 as seen on the 2024 990 EZ. So we have a loss of -$20,930.36 on this asset at the end of 2025. Schedule B, Part I The Schedule B list includes funds from grants, sponsorships and donations received and put to use in 2025, and a donation for use for supporting a medical symposium and associated events in 2026. We received $10,000 from the CRMO Foundation to use for the 2026 3rd NIH Autoinflamamtory and Immunedysregulatory Symposium and we are saving funds to be used for that symposium from our organization fundraising, and savings from 2025. The Amgen Rare Is Grant was given to our org to develop educational materials and a toolkit for advocates who help our org. This will be available in 2026. Other donations were made to support the Emmett's Eagles Putting for A Cure Fundraiser in August 2025. We asked for an extension due to medical issues arising before the May deadline for the president and her family end of March through May and June. We also realized that we needed to go over all the in-kind donations for events and other details from the event volunteers since we never had to do a schedule G before. The instructions were confusing and we went over a lot to get everything accurate, but this was difficult during health challenges that unexpectedly arose, including post-surgical complications. We got the IRS extension before the 15th of May and have the exemption letter on hand.