2025-07-04T02:22:52-07:00 2024-12-31 990EZ 2024-01-01 204915307 AUTOINFLAMMATORY ALLIANCE INC AUTO 4158318782 PO Box 590354 San Francisco CA 94159 Karen Durrant President 4158318782 2025-07-03 1 2024 2025-03-06 01:10:19Z X https://autoinflammatory.org X X 56382 X 49640 0 0 3 0 0 0 0 6739 1010 5729 0 0 0 0 55372 0 0 0 0 0 1224 17393 18617 36755 48411 31905 117071 X 32568 69323 0 0 15843 47748 48411 117071 0 0 48411 117071 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. International Autoinflammatory Awareness Month in August 2024 expenses for a translated online programs with medical experts and patient advocates that had live translation, with recorded translation, and the program was to put online to share later. No cost to attendees. We had hundreds of medical professionals and patients from around the world attending the programs. The major costs were large zoom meeting hosting and translation into many languages for the 2.5 hour program.$4559.03 which also included breakout rooms for questions and community engagement. We also had building lighting in various parts of the US and the world, and an in-person events hosted by local patients and caregivers in Missouri, Michigan, Massachusetts, Times Square NYC with donated billboards lit up for International Autoinflammatory Awareness Month, and global engagement for the Awareness Month from around the world by other organizations that helped to raise awareness across the globle.The events were free to attendees and the patient program was recorded to post online later with the translation. In addition, the Tough Cookie program at the Billerica Public Access TV station allowed patients to meet up and share their stories, and others raised awareness at home, and at public lightings of monuments in Orange, or with news stories and signs in their neighborhood, plus our global social media awareness efforts as well got global engagement and raised awareness for these rare diseases. The costs for all these awareness events and gatherings in person or online was $5690.87 for 2024 in the US. Efforts outside the US were led by other patient organizations and institutions collaborating for International Autoinflammatory Awareness Month, which this year we did not need to mail supplies abroad, as they had leftovers from last year in Canada, Spain and elsewhere. 0 5691 Rare Disease Day Awareness for Autoinflammatory diseases. This year, Our patient community gathered at a donated billboard in Times Square in New York CIty that was dedicated to Autoinflammatory Disease Awareness on Rare Disease Day. Prior to that, they were present for the Today Show morning TV channel outside awareness effort along with other rare disease advocates with the National Organization for Rare Disorders (NORD-we are a member org) with custom signs and other gear to raise awareness for autoinflammatory diseases. Our patient community gathered for food and drink for a meetup between events, and our patient advocate leaders attended the pre-program with NORD at the hotel the night before. All expenses for food and beverages for our patient community, plus parking and hotel for the patient leaders running our programs in NYC were reimbursed with receipts for all costs. Total expenses for international awareness (TV, livecam of the billboard and social media sharing) and patient gathering costs were $721.96 (sign printing was for multiple uses, and covered under our printing expenses on the IRS 990 EX, but totalled and extra $200. Total costs were $921.96 for signs, events, food and drink for our patient community (not charged to attend), travel and lodging for the advocate leader. 0 922 Resource online and print for education for patients and medical professionals. 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 large part of our operating budget yearly. $3396.40 covers these costs for autoinflammatory.org and the subdomains for our main site, that also includes downloadable information, and the large Comparative Chart of Systemic Autoinflammatory Diseases that is a global resources for medical professionals. 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, past programs to watch with translation in many languages and more. We also have autoinflammatory-search.org, which 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. The site has the option to print a page of the information, and hyperlinks to journal articles, and many other resources, videos and images to learn more about these diseases. Our main website and this search database need to be updated and improved in 2025 to cover some of the more newly classified diseases. We also participate and support a lot of research, so $900 is spent on survey monkey pro, which has led to our anonymous patient survey data being published in a number of papers. And $686.28 a year for zoom to cover meetings for research, board meetings, advocacy, patient support and help for our patient and caregiver advocates for projects. The total costs for this outreach to support education, awareness and research efforts from our org in 2024 was $4982.68. 0 4983 11596 Karen Durrant RN, president, founder, director, research lead, patient group admin and board member 25.00 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 15 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 Seth Durrant Young adult patient group volunteer moderator, and volunteer patient advocate. 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 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 UT 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 45852 89949 51851 21953 29640 239245 0 0 0 0 0 0 0 0 0 0 0 0 45852 89949 51851 21953 29640 239245 0 239245 4 3 10 46 3 66 0 0 0 0 0 0 0 0 0 0 0 0 239311 0 0.99972 0.99980 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Form 990-EZ, Part I, Line 16 $6675.95 for zoom, adobe, Office 365, Slack,Survey monkey for research, and other software, plus all the website hosting, domains, plugins and expenses for our blog (sadisupport.org), main website and subsites at autoinflammatory.org, autoinflammatory-search.org database/chart of autoinflammatory diseases, and autoinflammatorymonth.org for International Autoinflammatory Awareness Month. Awareness events and online promotion, expenses for in-person and virtual patient programs and gatherings (no charge to attendees) for Rare Disease Day in Times Square New York City (billboard donated in kind-not in these fund expenses), food and drink, parking, and hotel for the lead patient advocate for the event were included (721.96 total expenses for Rare Disease Day programs). There were two in-person events in MA with expenses for food and beverages for attendees (no charge for events), totalling 951.63 in expenses. Other expenses included for the zoom large meeting and translation for the August Awareness month online program into many languages (total virtual program and translation costs were $453503) . Some expenses for Facebook promotion for programs and awareness for Rare Disease Day, International Autoinflammatory Awareness Month and other awareess were 180.21 for the year. in addition, a correction to pay for expenses for the prior year for out-of-pocket costs with receipts for costs accounted for in 2023 was paid in 2024 for $3685.90 total. In addition, costs for annual IRS filings, state filings and NORD membership, business insurance and other costs were also included in these other expenses. Form 990-EZ, Part I, Line 20 In 2023 we had a total value at 12/31/2023 of 15,842.65 in BTC and DOGE. on 12/31/2024 our cryptocurrency which includes Bitcoin, DOGE, Bitcoin Cash and Bitcoin gold was valued at $47,747.89. The net value increase from end of 2023 to the end of 2024 was +$31,905.24. Form 990-EZ, Part II, Line 24 47748 is the end value of all cryptocurrency on 12/31/2024 for the Autoinflammatory Alliance. See Schedule O for full details on each form and the value of this currency. Form 990-EZ, Part II, Line 26 NONE We are only required to file an IRS e-postcard. Which was done before May 15, 2025. We had a large, unusual grant of $20,000 in late 2024 so we ended up collecting just over $50,000, but we have usually been under the $50,000 level for funds coming in most years. We do the 990 for state filings, and to have it featured on Charity Navigator or Guidestar. I had an onset of medical issues at the end of Dec. And again in the spring, with a Dr note for work leave on May 9th with some ongoing issues, and a car accident later, so this 990 was filed later than expected. But our 990 e-postcard satisfies the IRS filing need without the need for this 990EZ, and the CA e-postcard was also filed on time too.