About the Three Village APS Type 1 Benefit

          Two years ago, a six-year old child in the Three Village community was diagnosed with Autoimmune Polyglandular Syndrome (APS Type 1).  This affliction attacks the endocrine glands, typically develops in childhood, and continues throughout one's life.  To date, it has caused this child to lose the ability to metabolize vitamin D, which in turn causes an inability to absorb calcium (hypoparathyroidism).  The child has also lost the ability to produce cortisone, which is needed to maintain blood pressure at appropriate levels (Addison's disease).  Very little is known about this disease, and the necessary research needed to find treatments and a cure has never been done.

     The National Organization for Rare Disorders (NORD) is a "federation of voluntary health organizations dedicated to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service."  NORD has committed itself to sponsoring a grant specifically for APS Type 1 research.  The Three Village APS Type 1 Benefit directly supports NORD's funding of research on this disease.

     NORD's Medical Advisory Committee is in the process of reviewing the full proposals of those researchers who were invited back after the first round of draft proposals were reviewed.  The meeting to score these proposals is scheduled to take place, most likely, during the second week of November.  NORD will advise us immediately of the name of the APS Type 1 award recipient, the title of the study, and with which medical institution he/she is affiliated.

     A heartfelt thanks to everyone who has supported this effort.