Hi everyone!!!

 

I wanted to give an update about the walk in NYC - I know there are people that follow this group that haven't moved over to the other website.  The walk is taking place September 10th in NYC at 11:00 in Riverside Park (the entrance at 79th st.).  Free lunch and walk tee-shirts will be provided.  You can register for the walk & download pledge forms at www.pnhfoundation.org. 

 

The walk is being sponsored by Alexion and some people from Alexion will be at the walk to try to answer any questions you may have about eculizumab/solirus.  This is a great opportunity for anyone who is thinking about going on the drug.  Because of Alexion's sponsorship, we also have some travel money available for people who would like to travel to NYC for the walk.  Please email me if you are interested in that.

 

We already have 50 walkers registered - I would like to get up to 75!  I can't believe we are going to have so many PNHers is one place and I am very excited!  If anyone has any questions, please email me - and I can't wait to see some of you at the walk.

 

Sara