The APS Type 1 Foundation wishes you a happy and healthy 2026. Taking a look back on the milestones of 2025, we have a lot to be grateful for as we move into the new year.
A Look Back at 2025
The 6th International Symposium on APS Type 1
This past year, we hosted The 6th International Symposium on APS Type 1, where we welcomed old friends and new members of our community in San Francisco (our first West Coast event). We continued our legacy of bringing together top clinicians and researchers to share their work and provide critical presentations that help to inform and support our community.
In case you missed the symposium, here are some of the highlights:
- Dr. Lionakis gave an excellent talk about incredible success they are having around the RepAIRE trial and what the future may hold.
- Emily O’Brian shared her experience participating in the RepAIRE trial, including how Ruxolitinib has helped her personally.
- Dr. Anderson shared a general overview of the condition and potential opportunities in research.
- A member of the patient support team from Ascendis Pharma attended to have one on one discussions around Yorvipath®, the newest and only FDA approved parathyroid hormone medication, which has been a great addition to the management of hypoparathyroidism for our community.
- Julia Baghai, an endocrine nurse from UCSF, led an interactive training on Solu-Cortef® injections.
- Padma Gordon from RareGivers™ led us in group meditation and introduced us to the Emotional Journey Map, which describes the cycles of hope and grief for caregivers, patients and professionals.
Please take a moment to watch the presentation videos. Thank you to all who attended person. We hope to see many more of you in 2027 at the 7th International Symposium on APS Type 1. Dates and details to come.
Giving Tuesday
In 2025, we also continued to support the Foundation’s mission of education, awareness, and fundraising. In fact, thanks to your support, we had with our best ever Giving Tuesday, raising over $50,000. This money will be used to continue our outreach work, support research funding, grow The APS Type 1 (APECED) Registry and so much more. We thank you all for your continued support.
Our New Director of Community Relations
Because of your support, we were able to engage Amy Coan to join us as Director of Community Relations. Amy has a wealth of fundraising and non-profit experience. Her primary objective is build and connect our community. She would love to hear from you if you have any ideas or suggestions for our community and how we may better support your needs.
A Look Forward to 2026
Carry the Torch for APS Type 1
World Rare Disease Day is on February 28, 2026, which is just around the corner. We hope you’ll join us for our third Racery event, which starts on February 21st and runs through February 28th. In 2023, we walked 1,000 miles for APS Type 1. In 2024, we climbed a mountain for APS Type 1. In 2026, we will Carry the Torch for APS Type 1. Join our team for this fun virtual walk, and support the APS Type 1 Foundation!
HUDDLE Together
Join this year as we HUDDLE together. We are excited about these virtual events, which will allow our community to gather together more frequently, share experiences, and learn from experts and each other. Please mark your calendars for these events. We aim to have clinicians and other professionals join us where possible. We welcome any and all topics you think would be relevant so if you have ideas, please share them with Amy.
Conclusion
This is our 12th year as a non-profit organization. We’ve come a long way together. We are proud of the work we’ve done across the globe. There is always more that needs to be done, and we are committed to supporting each you as best we can. Please don’t hesitate to reach out to us if you have any questions. I’m always available to have a live conversation and can be reached at 973-886-9137 or by e-mail. Thank you for a very successful 2025. We look forward to seeing you in our HUDDLES this year.
Warm Wishes,
Todd Talarico, Co-Founder and President of the APS Type 1 Foundation