Hello all! Just wanted to send a quick update about our Tay-Sachs conference experience up-to-date. First of, St. Petersburg, Florida is beautiful and mellow and the weather is truly gorgeous with temperatures ranging from the high 70s in the day and low 70s at night. Because this is our first NTSAD Tay-Sachs conference, Ferd and I did not know what to expect, but so far we are overwhelmed with all the positive support, energy and information. In a matter of 2 days, we have met so many wonderful people, people who truly truly understand, feel, and live on the same journey we are on. Having seen the children who are similar to Gavin was also comforting-they are all truly beautiful and loving angels. Emotional, comforting, sensitive, sorrowful, encouraging, inspiring and hopeful are just some of the words that come in mind about our experience so far. The parent support groups have been great, although, I do have to say, I have been overwhelmed with the stories of some families who have lost their children from Tay-Sachs; some of whom have lost their child just a couple of months ago. Even within this conference, there are many families who are in different stages of dealing with “the situation.” Some come here solely for the support and therapy while others are still hopeful of the cure being around the corner. I’m the latter as we believe Gavin will be close to the “cure.” Nonetheless, we all love our children and that is why we are all here. We have 2 more days left of the conference and then we head back to San Diego on Sunday, April 11. More updates to come soon. Thank you very much for checking in on us.

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