Community Spotlight: The Zukosky Twins

Community Spotlight: The Zukosky Twins

By: Barbara Zukosky I am the mother of two amazing APSers, Sophie and Madeline. Sophie and Madeline are identical twins. Although they are identical twins, their journey has been similar but not the same. Their journey began when both girls developed fevers and a rash a few months before their first birthday. Their rash and…

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NIH (life) HACKS

By: David Seyfert life·hack/ˈlīfˌhak/ A life hack is any trick, shortcut, skill, or novelty method that increases productivity and efficiency, in all walks of life.  Life hacks,are all about eliminating life’s manifold frustrations in simple and deliciously clever ways. The good news is that you’re going to the NIH, you will have access to the finest physicians, researchers,…

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Foodie With Flavor Gaby Shares Dairy-Free Creamy Mushroom Stroganoff Recipe

By: Gaby Talarico Dairy Sensitivity and Dairy Allergy Besides gluten, another common and major food allergy in the U.S. today is dairy sensitivity. There are actually two forms of dairy sensitivity that people could experience: lactose intolerance and dairy allergy. While lactose intolerance is associated with the digestive system, dairy allergy is associated with the…

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Marathoner Becca Raises over $10,000

Marathoner Becca Raises over $10,000

Thank you for Becca Bednarz who ran for rare in NYC and raised over $10,000 for the Foundation’s restricted research grant.  Hear more from Becca in her own words. One of the first things I learned about four-year-old Gaby Talarico was that she loved imaginary games. I was five when we met, and at the…

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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…

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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…

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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…

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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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