Congratulations are due to two of our graduating seniors: Sarah Brennan and Brooklyn Dwyer. Navigating the teen years and high school is hard enough without the added challenge of a rare disease. These two young women inspire us all to never give up and reach our dreams. We wish you both the very best in…
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DAVE’S RESEARCH CORNER: Ground-Breaking APS Type 1 Research Published in NEJM
Congratulations to our medical advisory committee members, Drs. Michail Lionakis and Maureen Su, on their recent publications in the prestigious New England Journal of Medicine, entitled The Role of Interferon-γ in Autoimmune Polyendocrine Syndrome Type 1 and JAK Inhibition Immunotherapy for APS-1, respectively. In his article, Dr. Lionakis, whose work led to the first-ever clinical trial for APS Type…
Read MoreCOMMUNITY SPOTLIGHT: Kayla Mills
We are excited to share that Kayla Mills, one of our young adults with APS Type 1, was crowned Miss Arc Broward on May 19, 2024. The Miss Arc Broward Pageant empowers girls and teens with disabilities to pursue their dreams. Kayla is literally using her voice to advocate for others like her with “hidden”…
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APS TYPE 1 AND IMMUNE TOLERANCE: From Basic Biology to Clinical Translation
The APS Type 1 Foundation, with generous sponsorship by the Clinical Immunology Society and the National Institute of Allergy and Infectious Disease, hosted a FOCIS (Federation of Clinical Immunology Societies) Member Society Symposium at the FOCIS 2024 Annual Meeting in San Francisco on June 18th. Over 120 clinicians and scientists attended. The speakers delivered incredible talks about cutting-edge research relating to APS…
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NADF’s June 2024 Newsletter
The National Adrenal Diseases Foundation (NADF) is a patient advocacy organization whose mission is to advance education, support, and research to improve the lives of those affected by adrenal diseases. Today, we share NADF’s June 2024 newsletter.
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We Proudly Welcome our Inaugural Executive Director
Meet Svetlana Hutfles We are delighted to share a momentous occasion in our journey towards finding a cure for APS Type 1 and supporting those affected by this rare disease. Thanks to the generosity of our dedicated donors and supporters, The APS Type 1 Foundation is proud to announce that it has hired its inaugural…
Read MoreAscendis Pharma Announces Extension of U.S. Food and Drug Administration Review Period for TransCon™ PTH for Adults with Hypoparathyroidism
COPENHAGEN, Denmark, May 14, 2024 (GLOBE NEWSWIRE) — Ascendis Pharma A/S (Nasdaq: ASND) today announced that the U.S. Food and Drug Administration (FDA) notified the Company that information submitted in response to the FDA’s ongoing review of the New Drug Application (NDA) for TransCon PTH (palopegteriparatide) for adults with hypoparathyroidism constituted a major amendment to the NDA. Accordingly, the FDA has…
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At the Finish Line!
We did it! Thanks to all the biking, running, hiking, tae kwan do, rock climbing, salsa dancing, house work, HIIT work outs, sailing, weight lifting, walking, CrossFit, yard work, hot yoga, rowing, pickleball, circuit training, swimming, stretching, cooking, trail running, pilates, surfing, and spinning that you AMAZING people logged, as a team we covered 1647.2…
Read MoreFoundation Grant Yields Two Scientific Publications
We are grateful to all the members of APS Type 1 Foundation for their continuous support and advice. We thank APS Type 1 Foundation’s families for their hard work to raise funds to support APS-1 research. Rachid Tazi-Ahnini and Mimoun Azzouz In 2019, the Foundation’s research grant was awarded to Rachid Tazi-Ahnini and Mimoun Azzouz…
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Forever in Blue Jean for Genes was a Super Diamond Success
Dear Friends, Family and all APS Type 1 Supporters, The words “Thank You” do not feel sufficient to express our sincere gratitude for your generous support of the APS Type 1 Foundation at “Forever in Blue Jeans for Genes” last month. Looking back on the event, we were overwhelmed to feel all the love in…
Read MoreExternally Led Patient Focused Drug Development (EL-PFDD) Meeting
Many in our APS type 1 community are affected by hypoparathyroidism. On March 5th, Julia Richardson joined about a dozen other patients, to share the impact of hypoparathyroidism and treatment at an Externally Led Patient Focused Drug Development (EL-PFDD) meeting. The goal of the meeting was to share the effects of the disease and the…
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