And We’re Off…

And We’re Off…

Good morning racers! As we leave Wrigley Field and begin our trek to Washington DC, the APS Type 1 Foundation would like to give a heartfelt “thank you” to everyone who is joining us on this journey. Having a rare disease is by definition a lonely experience, so events like this are a welcome opportunity…

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27 Miles Fundraiser Update

In honour of James Read’s life and in celebration of his birthday on December 27th, his friends in the UK walked 27 miles in one day. They had almost 30 people to start, meeting by the tree of life outside Lincoln Cathedral, where James was a chorister. Friends, family and teachers joined part way for…

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Walk 1000 miles for APS Type 1

Thank you for interest in the 2023 “Walk 1000 miles for APS Type 1” virtual trek. Who: Anyone in the APS Type 1 community and their supporters! One of the best features of our online race platform is that participants can log any type of activity. You can run, walk, bike, swim, dance, circuit train,…

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NIH LAUNCHES FIRST EVER THERAPEUTIC CLINICAL TRIAL IN APS TYPE 1

Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the lives of persons with APS Type 1/APECED. Building on their research…

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DAVE’S RESEARCH CORNER – RADIOLAB.ORG RELEASES THYMUS PODCAST

RADIOLAB.ORG RELEASES THYMUS PODCAST We invite you to listen to Radiolab’s new podcast entitled “My Thymus, Myself.”  As you may know,  APS Type 1 results from a mutation in the AIRE gene which determines self-tolerance by programming T cells to recognize self and not self.  This 2022 Radiolab podcast does a good job of explaining…

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NIH LAUNCHES FIRST EVER THERAPEUTIC CLINICAL TRIAL IN APS TYPE 1

NIH LAUNCHES FIRST EVER THERAPEUTIC CLINICAL TRIAL IN APS TYPE 1 Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the…

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2022 Registry Update

Congratulations to the APS Type 1 (APECED) Registry community!  We’ve enrolled over 100 patients (106 to be exact) into our very own registry, The APS Type 1 (APECED) Registry.  We have big plans for 2023, including publishing an article using the patient data we’ve collected so far in collaboration with UCLA. We plan to curate…

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Meet our new board members!

As the aspirations and goals of our community grows, so too does our board.  We are excited to announce the expansion of our board of directors to include three new members: Dr. Pushpa Rao, Julia Richardson and Dr. Laura Rivard.  We are grateful for their support, collaboration and passion. Dr. Pushpa Rao is the proud…

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Giving Tuesday 2022: Donate today to make a difference for APS Type 1 patients!

Your generosity and support now will help make it possible for us to accomplish the following critical objectives in 2023: Host our 5th International Symposium in Washington, D.C. in July 2023 to bring patients, families and researchers together. Continue to build our global research network and fund critical research. Raise awareness and shorten the time for…

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URGENT: Medical Device Recall – Omnipod DASH® Insulin Management System 

Affected Product: Device Description Part Number Serial Number Omnipod DASH® Personal Diabetes Manager (PDM) PDM-CAN-D001-MMSKT-CAN-D001-MM All serial numbers Dear Valued Customer, You are receiving this letter as our records indicate you are a current or past user of the Omnipod DASH® Insulin Management System. This notice is being communicated as a voluntary Field Safety Notification…

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