I have had NF1 my entire life. I never really talked about it before now though. People who have known me (and known me well) for years will tell you they never realized I had the disorder. I guess in some ways I was worried what people would think. I hate it when people feel sorry for me or pity me and I am the world's worst for not admitting when I could use help. I have a fiercely independent spirit and I think that caused me to keep it to myself.
Now, my children share the disorder with me and are much more affected than I am. I can no longer just stand by and not worry about it. It is now time to do something. I have decided to start doing the walks, 5K, and other awareness/fundraising type activities. The first one I plan on participating in is Great Steps for NF in Memphis, TN. It was started by a friend of mine after she found out her son has NF1. It just so happens that it is the same weekend as Savannah's next trip to St Jude, so it was perfect timing!
Below is a link to the walk itself. Those of you who live in or near Memphis, come on out if you can. If I can get enough interest it would be great to have a team there for my girls! If you would like to participate you can sign up right on the site!
Great Steps for NF - Memphis
I have also set up a fundraising page for the girls. This is so they can raise money for research. There is a lot of promising research going on right now that may either cure this horrible disorder or at least find ways to halt the progression.
Savannah and Caroline Fundraising Page
Throughout the year I will be looking for other ways that we can raise awareness and research funds.