Stony Brook Parents Spread the Word About Rare Disorder

TBR News Media | November 17, 2019

After a house fire this summer, one Stony Brook family learned a valuable lesson. “People come first, things a distant second,” Dave Seyfert said.

He and his wife Sherri are two of the founders of the APS Type 1 Foundation, which aims to make physicians more aware of the rare disorder. APS type 1 is a rare autoimmune disease that affects one in two million people in the United States.


APS Type 1 Community Launches Registry to Share Knowledge with Scientists to Support New Discoveries

NORD | February 28, 2019

The Board of Directors of The APS Type 1 Foundation Inc. is pleased to announce today’s launch of the first web-based APS Type 1 (APECED) Registry, where patients and their families can input data about their disease at https://apstype1.iamrare.org/.

“The APS Type 1 Registry will provide a complete picture of each patient’s experience,” said APS Type 1 Foundation Board Member, Jennifer Orange. “We are launching this initiative to provide much needed patient data to medical researchers in order to help earlier diagnosis, enhance patient quality of life and discover a cure for this and other autoimmune diseases.”


Local Families Unite To Fight Rare Autoimmune Disease

WSHU | July 13, 2017

A Long Island couple has been fighting a personal battle for over a decade after their son was diagnosed with a rare, incurable autoimmune disease known as APS Type 1. 

Eleven years ago David and Sherri Seyfert watched in horror as their 6-year-old son had a seizure. When they brought young Matthew to the hospital, the doctors diagnosed him with Autoimmune Polyglandular Syndrome Type 1, or APS Type 1.


First APS Type 1 Publication releases from the NIH

August 19, 2016

The APS Type 1 Foundation is very excited to share the first publication from the NIH’s Natural History Study on APS Type 1 (APECED).

This is the NIH’s first APECED manuscript and has been accepted in the prestigious Journal of Clinical Investigation (JCI) Insight. This is the official journal of the American Society for Clinical Investigation(ASCI) and will provide great visibility to the manuscript and, importantly, to APS Type 1.

The APS Type 1 Foundation is very excited to share the first publication from the NIH’s Natural History Study on APS Type 1 (APECED).

“Redefined clinical features and diagnostic criteria in autoimmune Polyendocrinopathy-candidiasis-ectodermal dystrophy”

This is the NIH’s first APECED manuscript and has been accepted in the prestigious Journal of Clinical Investigation (JCI) Insight. This is the official journal of the American Society for Clinical Investigation(ASCI) and will provide great visibility to the manuscript and, importantly, to APS Type 1.

We congratulate Elise and Dr Lionakis for their commitment and dedication to this disorder, their tireless support for all of us, and the potential life changing results of this study. I also congratulate all of you that spent days enduring a lot of blood draws and tests to support the results of this study.

As noted in the publication…greater awareness of the new manifestations and diagnostic criteria would accelerate earlier diagnosis by 4 years and possibly prevent life-threatening endocrine complications. This should resonate with all of us that went through many challenging years of not knowing what was wrong with our loved ones and give hope us hope for the future.

Please share with your physician community…the link to the article is also attached below. An amazing day for all those challenged by APS Type 1. THANK YOU ELISE AND DR LIONAKIS!

It is available on at JCI Insights website: http://insight.jci.org/articles/view/88782 and as a PDF here.