What I’m Looking For

While I really do (oddly enough) enjoy sharing with you my innermost feelings about accepting my mortality and analyzing Fox’s 24, I started my CJD blogs and website with actual goals in mind.

I want to educate the public and raise awareness.

I guess this is my way of fighting for the mother who never quite understood what was killing her. Believe me, if it had killed me instead, she’d be the one sitting here blogging about CJD. This is my way of fighting for the woman who could never fight for herself. This is how I fight for my own and all subsequent generations of my family.

Charity.

I’d love to create my own charitable foundation, but I don’t have time this year. (I am not kidding; I have to graduate BU). I’d like to find a way to see that money gets to this cause I believe in so deeply–finding the cure for CJD. I think the CJD Foundation is great for all they do. They work directly with families who are new to this disease. I’m not new to it. In fact, I’m stuck with it more than the iCJD & sCJD families are. There’s no escape when fCJD runs in your family. If there were a “CJD Research Foundation,” I’d be all over it. I have heard some CJD Families have sent money to a Dr. Bastian…I suppose there are several independent researchers I could send cash to. I just have to find out who they are.

Facts.

Short of finding the cure for CJD, I’d at least like to find what triggers the disease. My mother’s uncle died of it at age 69; she and her brother died of it at 56. My mother and uncle’s father (my paternal grandfather, the brother of that dead uncle of theirs) is still alive! He has watched 2 out of 3 of his children die of CJD, lost one brother to it, but he is still alive. So while CJD was triggered in two of his kids at the same age, he is still alive. He is the only one (that we know of) who hasn’t triggered it. Not through accidents, stress, anesthesia, surgeries, etc. I want to know WHY. And then I want to make sure we all do whatever he did to avoid the trigger. Or does this skip a generation? Because then my cousins and I would be home-free! But their kids… See, there’s no escape from this.

Finding Others.

Having a blog and website up has really helped me to find others in my same or similar situations. Add in over the years the social networking of MySpace, Facebook, and Twitter, and the possibilities of being in touch with like minds are endless. I’ve found other E200K families. I will never forget the man with GSS running in his family who helped me with great advice about how to plan the rest of my life, hopes, dreams, and more. Others have walked this past path before us; we are not alone. I left the “past” in that sentence I accidentally wrote because I very much want all the questions to be answered and for this to be in the past.