Kaitlyn Lovett – 2022 Memorial Fundraiser

Thank you to the Lovett family and friends, the Holy Rosary CYO Program and Gordo’s North for their generous support of our foundation.  Their 2022 March Madness fundraiser in memory of Kaitlyn Lovett raised $1,775 in support of our mission to raise awareness about APS Type 1 and to help find a cure. The Holy…

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[NORD] $50,000 Grant Opportunity from the APS Type 1 Foundation

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following…

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The Centers for Disease Control and Prevention (CDC) Recommendation for the 4th vaccine dose for COVID-19

The CDC now recommends a 4th vaccine dose to be given at least 12 weeks after the 3rd dose for mRNA vaccines in patients >12 years old with moderate or severe immunocompromise. No such recommendation is yet given by the CDC for <12-year-old individuals. Given that APS1 patients carry type I IFN autoantibodies and many are also on immunomodulatory medications that can…

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ELSA Passed in the U.S. House of Representatives

Did You Hear The BIG News?On Monday, April 4, 2022, the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (ELSA) with supermajority support! We are thrilled that our small-but-mighty bill has passed the U.S. House of Representatives and is one step closer to becoming a law. We wouldn’t be here without the grass-roots efforts of our advocates…

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DAVE’s RESEARCH CORNER – March 2022

Somewhat serendipitously, before NORD announced that Dr. Lionakis was named a 2002 Rare Impact Award Honoree, we had planned to feature Dr. Lionakis and his work. We especially want to recognize him for all that he has done to advance the scientific community’s understanding of APS 1/APECED as well as for his kind and compassionate care…

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Update on the 2022 Rare Disease Day!

This year’s Rare Disease Day was a resounding success! Thank you to many of you for participating with the Zebra-themed shirts and jean ribbons, for joining the virtual event and for various activities you have conducted to raise awareness on rare diseases.  If you missed the wonderful virtual event organized by our friends at NORD,…

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Community Spotlight: Ashley Harris

Meet Ashley Harris, APS Type 1 mom and administrator of the Foundation’s Community Facebook page for friends and families with APS Type 1. “Originally from San Antonio, TX, and currently living in Washington, D.C., my husband, Dave, and I met at the University of Alabama (Roll Tide) and have been living an adventurous and chaotic military life…

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NATPARA® Update

NATPARA® Update Pharmaceutical company Takeda continues to work with the U.S. Food and Drug Administration (FDA) to bring NATPARA® back on the market.  Unfortunately, there is more work to do.   Click on the link below to read Takeda’s recent regulatory update.  According to the update, Takeda plans to continue providing NATPARA® to those enrolled in its…

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#RAREis Scholarship Fund

Pursue Your Dreams through the #RAREis Scholarship Fund The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the #RAREis Scholarship Fund, a scholarship dedicated to the…

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SAVE THE DATES: IDF x APS Type 1 Get Connected Series 2022

In partnership with the IDF (Immune Deficiency Foundation), we are planning a regular virtual get-together for our patient community, so that we can connect with other families and medical professionals in the APS Type 1 field! The virtual platform via Zoom allows us to meet and ask questions, share tips, and bond together with community…

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The RARE Compassion Program (Community News)

It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Although understanding the experience of a person with a rare disease can enable improved health, faster and more accurate diagnosis, and better care for individuals and families living with rare diseases, medical professionals…

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A Rare Disease Day Toolkit! >> Feb 28, 2022

DO YOU KNOW A STUDENT WHO IS INTERESTED IN RAISING AWARENESS? February 28 (the rarest last day of the year) marks World Rare Disease Day.  Julia Band Orange and Julia Finch have compiled materials to create a “Rare Disease Day In-a-Box”!  Please click here to find an awareness video, a sample speech, an article for a school…

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Breaking Down Common Terms in the Immune Deficiency Space

Breaking Down Common Terms in the Immune Deficiency Space

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…

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FDA APPROVES ANTIVIRAL PILLS TO TREAT COVID-19 AT HOME

The 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…

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Dave’s Research Corner – June 2022

How rare is APS Type 1 in the United States?  Intriguing new research by Dr. Lionakis’ team, which exactingly analyzed existing public health records, suggests the number of individuals with APS Type 1 living in the U.S. is far greater than previously believed. Title: Prevalence of APECED‑Like Clinical Disease in an Electronic Health Record Database, USA  LETTER TO EDITOR  https://doi.org/10.1007/s10875-022-01254-0…

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