As with any medical field, there are a number of terms in the immunodeficiency community that can quickly get confusing for new patients and their caregivers. A few examples: immunocompromised, immunosuppressed, primary immunodeficiency, secondary (or acquired) immunodeficiency, inborn errors of immunity. What do these terms mean? And how do they relate to each other? Defining…
Read MoreThe Food and Drug Administration announced an emergency use authorization (EUA) of antiviral treatments for mild-to-moderate coronavirus disease (Covid-19) on December 22 and 23rd. This wonderful news provides a useful new course of action for covid-19 infections, including breakthrough cases of omicron as well as the other variants. These antiviral treatments will eventually be for…
Read MoreOn December 22 and 23, 2021, the Food and Drug Administration (FDA) issued Emergency Use Authorizations (EUAs) that allow 2 new oral antiviral agents to be used in this patient population: ritonavir-boosted nirmatrelvir (Paxlovid) and molnupiravir. The NIH’s COVID-19 Treatment Guidelines Panel issued an updated statement today to provide clinicians with guidance on the…
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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…
Read MoreBy: 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,…
Read MoreBy: 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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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…
Read MoreWe 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 MoreOn 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 MoreAs 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 MoreBostonSight® 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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