Hi,
I will come and will help as time allows.  I'm the mom of a PNH patient.  Put a flyer together and I will post it at work.

Linda Childs


severina829 wrote:

Hi everyone,
I know most people have moved over to pnhdisease.org, but I thought
I would put a posting here anyway.  I'm pasting what I put on the
other webpage :)

Hi everyone,

After the success of the walk for PNH in FL (thanks again Erin!!),
we are trying to put together a similar event in NYC. We would like
to have it in central park sometime in late summer/early fall.
However, we don't want to have it unless we are going to get
participation from PNH patients, their family and their friends.
There are so many of us the NYC area, I think it could be a huge
group and a lot of fun. We want to make a whole event out of it and
it would be a great chance to meet and mingle with other patients.
We also plan to invite local hematologists and PNH specialists.
Alexion wants to help out with this, if they can, and I think it
would also be a great opportunity to "get to know" the company.
Please send me an email or private message if you would be
interested - I want to get a sense of involvement before I continue
planning. We are also thinking of doing a 5K run at the same time,
so people who are not interested in PNH, but are interested in
running (i.e. people in the local running club)will be involved.
Instead of collecting pledges, they will pay a registration fee.
This is an event that would not take up much of your time, but has
the potential to raise a LOT of money and awareness of PNH - and it
should be fun, to boot 

Sara