Interview with Genzyme Horizon’s Reporter

Genzyme's Horizon Newsletter

I had my first official interview regarding Hannah and Gaucher’s 2/3 Friday afternoon.

A reporter from Genzyme’s (the people who make Cerezyme, Hannah’s enzyme replacement therapy) called to get “Hannah’s story” for their upcoming newsletter, Horizons.   This newsletter will go out to the entire Gaucher community (types 1, 2, and 3), clinicians, etc. 

It was a very easy process, as the reporter was very genuinely interested and easy to talk to.  He explained the first part of the article will be an explanation of GD23, and the second part would be about Hannah and our fight for her.

What was most interesting (but not surprising to say the least), the reporter admitted that this is the first GD23 story that he has done.  I have a feeling that it is possibly the first GD23 story to be in one of their newsletters! 

I don’t think Genzyme was trying to shy away from GD23, but GD1 is really all that has been touched on in their previous newsletters.  Like with so many other Gaucher type 1 families (95% are type 1), our form of the disease is kind of like the “forgotten” type of Gaucher’s since there are so few of us.  But Genzyme has really been awesome in trying to help me connect with other families and in trying to get our story out there.

The reporter is going to send me a copy of it before it goes to print.  I really hope it gets people’s attention to realize that our children (Hannah and the other GD23 kids) are fighting a losing battle right now, and that we really need their help to save our children’s lives!