Awesome child drawing!!!

 - Contributed by Sara P. (age 11)

" Through the forest across the sea someone somewhere has NF just like Me"

Danny and his daughter, Mia - NF1 story

Danny Rashkind -

Danny came home from work one morning and said “ I’m gonna run a marathon”, I laughed and just added that to the list that we both had going of “I’m Gonna’s”!

He did what he said he was going to do. He trained, and trained and hurt and hurt, but he kept on running/walking the marathons! All to raise money for research and a cure for NF!

Danny has ran many miles in honor of Mia, he has raised money and he has dedicated part of his life to finding a cure for NF, not just for Mia or himself, but for all of us that are affected by NF in some way.

Danny is a dedicated father to Mia and he shares a special bond with her, not just NF, but they share their inspiration to not let NF hold them back.

Run Danny, Run! Every step that you take, is appreciated and is one step closer to a cure!

RIP Ashley Zowine

This was a blog post that either my friend "Bee" or I began to write back in February, when she passed away, but I just noticed it was still in my blog list, as a unpublished draft, so I decided to finish  it and publish. All that was written at the time was the following....

"NF2 claimed another of our own recently. Ashley Zowine was 25 and died of pneumonia from complications of surgery. I admit that I didn't know her well, but we met a few years ago."

Anyways, Ashley and I  met during a trip to NYC, of a bunch of gals and one guy, all of whom had NF2. I will never forget that trip and it meant the world to me. It was great to be with other people who all had the same disorder. Here is a picture from the trip. Left to right: Anne (me), Christina, Ashley, Michael, Kristina, Jessica, Amber. Bee also came on this trip but is not in this picture.  Now, Ashley is watching over us, from heaven.