Tuesday, June 5, 2012

Getting Closer to a Grand Total...

I know you all must be anxious to hear the 'Grand Total'. I am too. I have been collecting donations in 'batches' and sending them off to the FIRST Foundation. So far 2 'batches' have been sent. Since I know you are eagerly awaiting the 'big news', Ill let you in on a sneak peak of what has been donated so far. As of now $2, 445.73 has been donated to the FIRST Foundation thanks to all of you. I have at least one more 'batch' to send in so this is not even the official total!!

I cannot not believe how successful this fundraiser has been and I could not have done it without all of your help. Thank you, thank you, thank you!! It brings tears to my eyes to think of how generous people are and willing to help support a condition that is so rare and unknown to much of the public. This fundraiser was an excellent way to raise awareness for Ichthyosis. More than 10 towns in Connecticut participated and states include Rhode Island, California, Illinois, Pennsylvania, Massachusetts, Maryland, New York and New Jersey (let me know if I missed your state). And my brother and his family were raising awareness up in Prince Edward Island, Canada. I'd say that is a nice start for my first FIRST fundraiser.

Again I can't thank you all enough. I am truly blessed to have so many caring people in my life and Evan's. Hopefully our efforts will help find what we are looking for someday, a cure and acceptance by all. Check back soon and hopefully I will have that 'Grand Total'... sooner than later!!!

Evan on Memorial Day 2012



  1. Amazing!!!! Can't believe how much you collected! So exciting!!

  2. Hi DeDe!
    Courtney's blog has brought me here. I have a two-and ahalf-month old boy with HI. We live in Israel and there are no other children here with HI, Omri's the only one. I would love to get in touch with you and learn from your experiences maybe; Omri is also a bit of a difficult eater among other things...this is my email acolbatz@yahoo.com hope to hear from you! Anja