The APS Type 1 Foundation Wins $50,000 Grant and Retains The Park Group

We are thrilled to announce that the APS Type 1 Foundation has won a $50,000 grant for general operating support from the Chan Zuckerberg Donor Advised Fund (DAF), through the Silicon Valley Community Foundation (SVCF). This grant is a game-changer for our Foundation and we owe special thanks to our Medical Advisory Committee for their…

Read More

The FDA Authorizes Evusheld, a COVID Pre-Exposure Prophylaxis in Certain Individuals

On December 8, 2021, the U.S. Food and Drug Administration issued emergency use authorization for tixagevimab/cilgavimab, known as EvusheldTM.  This is a long-acting monoclonal antibody combination against SARS-CoV-2 given every 6 months as pre-exposure prophylaxis for people who are high risk and do not mount an antibody response to COVID vaccine or cannot get any COVID vaccine…

Read More

Dave’s Research Corner

As we close out 2021 and look forward optimistically to 2022, I share with you two articles, both from our NIH study team.  The first article shows the great progress they’ve made diagnosing and treating APECED pneumonitis.  The second article provides a comprehensive and thorough, but not overly technical, review of the disorder.  This is…

Read More

BostonSight Features Dave Seyfert in its 2020 Annual Report

BostonSight® features our very own Dave Seyfert in its Annual Report 2020 on page 19. And, as a bonus, there’s a photo of our group from our 2017 symposium at Stony Brook, NY. “BostonSight PROSE preserves our son’s vision. He’s now untethered!” -Dave Seyfert BostonSight® is a nonprofit healthcare organization that advances the treatment of…

Read More
Running for Rare in NYC

Running for Rare in NYC

On November 7th we will embark on a 26.2 mile journey, and we hope you all will join us. We are very excited to share that Rebecca Bednarz, a long-time friend of Gaby Talarico will run in this year’s New York City Marathon with NORD’s Running for Rare® Program. All the money Rebecca raises will…

Read More

Dr. Lionakis Recommends APECED/APS-1 Patients Get 3rd Vaccine Dose

We’ve known for some time now that APS Type 1 patients are at an increased risk for severe COVID-19 complications.  For this reason, we’ve all been particularly cautious and vigilant.  And, APS Type 1 patients have been urged to get vaccinated.  Last week, the FDA and CDC recommended that people who are moderately to severely…

Read More

Looking for leaders for new committees!

As we continue to expand and grow our foundation, we realize that we need and want to tap into the amazing talent in our community.   If you would like to get more involved, we are looking for two volunteer chairpersons to lead vital committees that are growing in our organization.    Fundraising Chair – Are…

Read More

Community Spotlight

Meet The Smith Family! My name is Jade Smith. I live in beautiful Southern California, where I am a teacher and single mom to 2 amazing children (I’m obviously biased, but they are really cool). Geoffrey turns 15 in July of 2021, and Allyson will turn 13 in November. They are both at the ages…

Read More

Recent Article on Animal Models in AIRE

Dave’s Research Corner Each quarter, we like to share a research article about APS Type 1 to help keep us all up to date.  This time, we share a recent article entitled “AIRE deficiency, from preclinical models to human APECED disease.”   Animal models are very important because they help us understand the intricacies of…

Read More

Dr. Maureen Su joins our Medical Advisory Committee

We are thrilled to welcome Dr. Maureen A. Su to the foundation Medical Advisory Committee.  Dr. Su joins Dr. Mark Anderson (University of California, San Francisco), Dr. Richard Auchus (University of Michigan), Dr. Michail Lionakis (National Institutes of Health), and Dr. Dana Orange (Rockefeller University). Dr. Su is a Professor of Microbiology/Immunology and Medical Genetics…

Read More