Dear IGAN family, We are planning a Patient and their families picnic to be held here in our home immediately following the Walk event (Jun 22nd, 2014). You will have the opportunity to meet the Columbia University team of doctors that are currently working on several very important studies on IGAN. Prior to our picnic the team of Drs will be gathering blood samples at the walk event. If you are local this is a great opportunity to help with the study. The more family members you bring into the study the more answers we will get going forward. We are starting preparation for the ASN Capitol Hill meeting on May 1, 2014. We are making this a day trip. We will be meeting other kidney foundations at 800 am and then heading for the hill at 1000. I will send more info out as we get more from the ASN (American Society of Nephrology) Our inaugural IGAN Foundation Lights The Night In White to take place on June 28th, 2014. This will be a wonderful event at the Blair Family home. Tickets are 75.00 per person which includes buffet from our areas finest restaurants, signature cocktails and a live band. The night will be all lit up with white lights and we are requesting to wear white. We do not have the invite up on the web site yet but hope to have that running shortly. If you are close please take the opportunity to join us on the events. You will have a chance to meet other families that are in a similar place. It is not easy being any of us. The day to day uncertainty and lack of knowledge can be extremely frustrating. Use this opportunity to really be part of our IGAN Family. You wont feel so isolated. Last many of you are far so please think about walking in your area on the same day as we are. As I said before, reach out to your friends and family, lace up your sneakers ask that everyone donate the walk fee and make a statement! You do not have to be here to raise awareness. After your walk you could host a breakfast or lunch and feel really good that you were a part of this day for IGAN ! Let me know if you want my help on how to get it started. Area reps especially let me know if you are interested and I will send a specific list out ASAP. Always in my prayers :) Bonnie Schneider Director & Founder The IGA Nephropathy Foundation of America P.O. Box 1322 Wall, New Jersey 07719 0)732-770-7377 f) 732-681-3462
Posted on: Sat, 05 Apr 2014 01:45:04 +0000
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