7th annual Driving for a Cure Golf Outing
We look forward to having you join us in 2013 for the 7th annual Driving for a Cure Golf Outing on May 17th. Remember, the outing fills fast, last year we had 34 wonderful foursomes and 36 is our max. So start talking to your friends and get your team locked and loaded. (No price changes this year!) If you’d like to take advantage of our corporate rates, support us with an auction item, or just join us for dinner and bid on our fabulous prizes... whatever your level of support can be this year...we’d love to have it and we’d love to see you! Any questions contact Todd Talarico at 973-886-9137 The registration form can be found here by searching the site, or in the News folder.
WELCOME! If you've found this site, either you or someone you know or love has been recently diagnosed with a rare disease called Autoimmune Polyglandular Syndrome Type 1 (APS Type 1) also known as (APECED) Autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy.
Our long term goal is to establish a non-profit organization for education and research. But for now we have developed this web site to address three issues.
- Help educate those that have been recently diagnosed, and their families, about this rare disease.
- Provide a centralized registry that will unify all those that have the disease so that we can find and communicate with one another.
- To raise money for research that hopefully will find a cure for those who suffer from this disease.
We hope you will take the time to visit our research section, ask a leading authority on this disease a question or two, and register with us so we can get you in contact with those that have gone before you in dealing with the challenges of APS Type 1/APECED. The best advise you receive many times will come from those that have gone before you.
Please take time to visit the great links to the ailment sites like Hypoparathyroidism and Addison's Disease. These diseases, as stand alone conditions, have great people supporting them through these sites and are a wealth of excellent information for those of us that have to manage multiple conditions.
Finally, if your financial means allows, please donate to our Restricted Grant that we have set up with NORD (National Organization of Rare Diseases). By channeling funding into research we can ultimately find ways to take what researches already know about the AIRE gene and find a cure.