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…

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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…

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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…

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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…

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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…

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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…

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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…

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Here’s What You Missed…

We had a great Get Connected Zoom on May 15th. We missed you. Without breaching any confidentiality, we discussed and shared about the following topics: Alopecia and Vitiligo, including possible treatments Upcoming Virtual Symposium Covid-19 Vaccines Long-acting hydrocortisone Home calcium monitors and more We hope you can join us next time. Get Connected Zooms are…

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Sharing NADF’s Quarterly Newsletter

The National Adrenal Diseases Foundation, whose mission is to inform, educate, and support those with adrenal disease and their families to improve their quality of life, publishes a regular newsletter that always contains useful information for our community. We are pleased to share the June 2021 National Adrenal Diseases Foundation Quarterly with you. Click here…

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Join the IDF National Conference from June 23-26!

The IDF Primary Immunodeficiency Conference Is going virtually this year, and the APS Type 1 Community are invited. The conference is free for our patients and families, so please join in! There are many sessions that will interest our patients and family members of all ages, and there are three that specifically focus on APS…

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