Autoinflammatory Alliance

10/08/2026

DAF Day 2026 is here! A nationwide celebration of generosity through Donor-Advised Funds. Workplace matching funds donations, workplace giving, recurring donations all apply.

When you make a DAF gift to the Autoinflammatory Alliance today, you’re helping us Your support will help us greatly to increase patient activities, webinars, update websites, advance research advocacy and more.

Here’s how you can take part:
🧡 Today your DAF can do more than ever before. Join us and be part of the movement.
👉 Give now: https://givebutter.com/DAFdayautoinflammatory
You can donate here on the link below, or through your work or personal giving platform. We are on DAF pay, DAFFY, Benevity, Pledge, Fidelity Charitable, Smart Payables, Cybergrants for various systems and we are open to any donation you can support.
Or just make a donation if you don't have a DAF too. If you have donated through work, message me and I can add it to the manual donation list.

Your support will help us greatly to increase patient activities, webinars, update websites, advance research advocacy and more. Thanks to all who have already donated in the past-thank yous are coming! We appreciate all support, at any amount.

✅ Give easily and get counted in today's impact by giving through DAFpay https://app.dafday.com to help the Autoinflammatory Alliance with the DAF day promotions.

Thank you!

10/07/2026

Is anyone on Tiktock who is willing to share something good that they saw today and hashtag with our org name, the Autoinflammatory Alliance with this Greater Good challenge that could help us win a donation of $50,000? This would help us do more good for many patients, and fund more research. Thank you

10/03/2026

Last hours to donate! This fundraiser supports RELA research, a more recently identified, complex disease. If you can support this memorial research fund in honor of Kapil, it will make a big difference.. Research for this disease can help other autoinflammatory diseases too. We hope that more people can be saved. 🧡

A special thanks, and best wishes to Lauren, Kapil's wife, who is about to do her first Hyrox race in honor of Kapil. He had hoped to be able to do this race.

If you are an expert researcher on RELA, contact me at [email protected] because we want to help this fund support the right research that will change and save the lives of others. Thanks to all for your support.

Donate today to support Kapil’s legacy by funding medical research into RELA Associated Inflammatory Disease.

09/22/2026

This important PFAPA Genetics study still needs a few more patients who have PFAPA, or who are now in remission from it. The NIH Clinical Center is still seeking patients to participate in their PFAPA study from home. You or your child can submit a saliva sample for testing for their study to find the cause for this disease. Also, if you have PFAPA, and are getting your tonsils and/or adenoids removed, please contact them to have them properly prepared to ship for analysis. International patients are welcome. Contact Mary Bowes RN at 240-408-0970 or email [email protected]. Thank you. Please share this too!

09/21/2026

Please support this memorial research fundraiser, and read this family's story. Kapil passed away due to serious complications from RELA, a more newly classified and complex autoinflammatory and immunedysregulatory disease last year. He was a kind and wonderful spouse, father, sibling and friend to all. This year, his wife is honoring his legacy through this fundraiser to support RELA research. https://givebutter.com/kapil-melkote-legacy-fund

She also has an upcoming Hydrox race to finish what her husband so greatly wanted to accomplish, and Lauren is trying to help pave a path to improved research, care and treatment to help others with this disease, including one of her children. Plus hopefully spare others from the suffering her husband and her family has endured.

If you can, please feel free to donate to support this special research fundraiser, or one of our other fundraisers to help improve the diagnosis, care and treatment of patients with autoinflammatory diseases. These are lifelong conditions, with a range of severity, and with RELA and many of these newly classified diseases, every case is redefining the disease presentation and symptoms.

Our hearts go out to Kapil's family and friends. Every person that we lose to these diseases motivates us to futher the efforts for more research and help for patients.

We have been a leading supporter of autoinflammatory research for years, and we will work with Lauren to find the right place for these research funds to be put to work to honor Kapil, and help all those suffering from RELA and related diseases. Please contact [email protected] if you are a researcher for RELA.
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Donate today to support Kapil’s legacy by funding medical research into RELA Associated Inflammatory Disease.

09/14/2026

We are recruiting participants for a research study about genetic testing and reanalysis in the rare disease
community.

If you or your child have had genetic testing, we would like to hear about your experience.
• Adults (18+)
• Patients or caregivers
• ~20 minute online survey
• If you have received a negative or VUS (uncertain) result or are waiting for a genetic test result

The goal is to better understand how families learn about, experience, and access reanalysis of genetic results, and
how the process can be improved.
• Participation is voluntary
• Minimal risk
• No identifying information required
• There are no direct participation benefits

Take the survey here: https://surveys.scuhs.edu/jfe/form/SV_b27eg03U41DdvKu

Please consider sharing this post to help us reach more families.

If you have questions about this study, please contact: Grant Nink at [email protected]

Thank you for considering participation.

09/03/2026

Please read this touching story of Kapil, and his family. Kapil passed away due to serious complications from RELA, a more newly classified and complex autoinflammatory and immunedysregulatory disease last year. He was a kind and wonderful spouse, father, sibling and friend to all. This year, his wife is honoring his legacy through this fundraiser to support RELA research. She also has an upcoming Hydrox race to finish what her husband so greatly wanted to accomplish, and Lauren is trying to help pave a path to improved research, care and treatment to help others with this disease, including one of her children. Plus to hopefully spare others the suffering her husband and her family has endured. If you can, please feel free to donate to support this special research fundraiser, or one of our other fundraisers to help improve the diagnosis, care and treatment of patients with autoinflammatory diseases. These are lifelong conditions, with a range of severity, and with RELA and many of these newly classified diseases, every case is redefining the disease presentation and symptoms.

As you may recall, earlier this week, on the last day of International Autoinflammatory Awareness Month we honored those who have passed away due to an autoinflammatory disease, and also dedicated healthcare providers for these patients that we have lost too. I am sharing this now, with the permission of the family.

Our hearts go out to Kapil's family and friends. Every one we lose to these diseases motivates me to futher the efforts for more research and help for patients. We have been a leading supporter of autoinflammatory research for years, and we will work with Lauren to find the right place for these research funds to be put to work to honor Kapil, and help all those suffering from RELA and related diseases.
https://givebutter.com/kapil-melkote-legacy-fund

Donate today to support Kapil’s legacy by funding medical research into RELA Associated Inflammatory Disease.

08/31/2026

Flat Inflammasome was spotted at Donner Lake, high in the Sierras in California representing TRAPS for International Autoinflammatory Awareness Month! Send in your images to add to the awareness collection.

08/25/2026

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08/19/2026

What happens between appointments? What does today look like for you?

For many people with autoinflammatory disease, daily life includes much more than dealing with symptoms.

It may include:

*planning around medications or injections
*calling a specialty pharmacy
*dealing with insurance approvals
*packing supplies before leaving home
*missing school, work, or family activities
*resting during a flare
*changing plans from one day to the next

These are the parts of life healthcare providers may never see during a short appointment.

The Autoinflammatory Alliance is collecting short videos and photo stories from patients and caregivers for Cytokines Gone Wild: Living With Autoinflammatory Disease.

🎥 Submit a 1–3 minute video
📸 Or submit one photo with a short written reflection
📅 Deadline: August 31, 2026
👇 Submission guidelines and guided prompts are in the comments.
📧For more info email [email protected]