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World LSD Symposium, Day 1

Posted Feb 16 2011 11:17pm

Hannah smiling in the arms of Dr. Weinreb, her guardian angel!

Today was the first day of the WORLD Lysosomal Storage Disease Symposium.

Even though I knew the conference material would be over my head, I really went there just to meet some of the researchers and doctors that I have been talking with over the past two years since Hannah had been diagnosed as well as to catch up with some that we had already met.

It was a very successful day in that respect!

Daddy and I took Hannah with us along with Hannah’s nurse so we could introduce her in person.   We got to meet Dr. Zimran from Israel as well as his colleague Dr. Elstein who was just wonderful with Hannah!   We met some of Dr. Sidransky’s students from the NIH.    It was great to finally meet Rhonda Byers, head of the National Gaucher Foundation, in person — very personal, and after all the conversations on the phone we have had over the years, it was great to meet in person!

I also got to meet and hang out with a mom of a type 3 boy that I met online.  She and I just clicked immediately, and I was very thankful to have her to share stories with.

But I have to admit, the person that I wanted to meet most of all today was Hannah’s guardian angel specialist from Florida, Dr. Neal Weinreb.  I have mentioned him on here dozens of times over the years on here.  Even though he had never met Hannah, he has always gone out of his way to help me understand her disease process, find people to help, and just an amazing advocate for her.   He was even sweeter in person.

The strangest part of their meeting is that Hannah wanted to go to him to be held.  For her, this is unheard of — going to a stranger?   So she was being held in his arms, smiling at him, and just being her happy self.  It is almost as if she knew this man really cared about her.

I also got to catch up with Dr. Goker-Alpan as well as Dr. Sidransky – both from our NIH visits, and it was so good to see them.   I also got to chat briefly with Dr. Roscoe Brady, who is considered the “grandfather” of Gaucher disease, as he pioneered the understanding of the disease and helped create the Cerezyme that is keeping Hannah with us today.

I sat in on a few of the speakers, but honestly, this scientific stuff is so over my head.   When they were discussing the cellular levels of Gaucher and other things, I just was lost.

Tomorrow, Dr. Goker-Alpan and I are going to catch up before lunch, and I’m really looking forward to that.   After that, we have lunch with our Genzyme rep so it will be good to learn what is new with Genzyme, especially with the news that they are being bought by Sanofi today!

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