If You Are Going To The CJD Family Conference

If you are going to the CJD Family Conference and interested in helping me get info about it back to the masses, please e-mail me. (Hotwords AT mac dot com).

I'm looking for people to interview about their experience at the family conference, what you learned there, who you met, etc. You can be my correspondent and I'll be making a podcast out of all the audio...if I get some participation. So if you are interested, let me know. I can't make it to the conference this year, but I would still like to support it and be there "in spirit."

I am definitely NOT attending the conference next month

The Bad News:

It's going to be too much of a financial burden to attend the conference next month for me, especially with Boston University's expensive tuition due. (More on that in another blog, but it's impossible to get much finaid in my program so it's all out of pocket). I seemingly can't stray far from the chiropractor these days either, which is also another story which some of you may know.

The Good News:

I don't really feel I have to attend the conference in order to make a difference. Though I'd really love to meet everyone in person, especially more E200K people, and fCJD families in general. I'm going to continue doing my thing from Phoenix for this year...and will again try for next year's family conference.

My New Project Is Beginning

I'm starting a new website and a new blog dedicated to one very tailored subject -- finding the cure for CJD. Read and comment on the new blog.

I elude on the new blog to the fact that I have purchased the domain CURECJD.com. More to come on that later... Right now, I'll start with the blog. The plan right now is to post links to new info on who is finding the cure for CJD.

If you've read CJD Talk for a while, you know I come from a long line of genetic cases. How long, I am not sure. Since this is the Internet, I'm going to post some info right now I just hope someone will eventually find by Google search someday. I have tried to look online for relatives of Walter Zadzielka before and have come up empty. I did find a Vicki Lovett had posted something online somewhere years ago trying to find autopsy info on Walter Zadzielka...or is it Zadzeilka, or is it Zadel? I e-mailed her but the address no longer worked. Ms. Lovett, I have no info on Walter's autopsy. But he was my mother's uncle.

My mother came from a long line of Polish Catholics. Her family was huge and from Ohio. My mother used to tell me she had 100 cousins. There's a huge potential for many more genetic cases of CJD right there.

So if you happen upon this blog and you are related to anyone whose last name is Zadel, you may be a relative. If you are, the genetic mutation is E200K. That is the only autopsy info you would have gotten off of any Zadel autopsy. Feel free to get in touch with me, or you don't have to. It's personal; I understand.

CJD is a death sentence, but it shouldn't be. So since my deal in life is genetics I honestly don't care too much about the beef/vCJD side of things. It's horrible, yes. I'm not taking anything away from that. But I feel like I need to get a move on here if I want to see my own grandchildren someday. My mother died at age 56 and I'm 27 now, hence my extreme interest in focusing on the cure.

At the moment, the cure seems to be exploring something like PPS. It is no cure today in my opinion, but it's all we've got. There are other things being researched, and I'd like to make sure people know about those items too.

So now you know that finding the CURE for CJD is my interest and you also know why. Am I a carrier? I don't know. I won't get tested. Whether I carry it or not, the cure is still important to me. The cure is the only answer whether beef is in the equation or not. CJD is in the blood supply. It's not going away. And what if there is another wave? What if we can cure the animals first? What if we can only cure one mutation of CJD at first?

This is what the new blog will be about. Feedback welcome.

Mother's Day Sucks.

It's Mother's Day and I wish you a happy one, but let's face the truth here -- this is not a happy day for a lot of us who have lost a mother to CJD. I try to make the best of it by focusing on the living, especially because I have a wonderful stepmother and her mother is a wonderful grandmother to me. But we also have to remember the dead.

My mother's name was Phyllis Larson. She was a Led Zeppelin fan. My mother liked rock n' roll. I never did figure out if she was a democrat or a republican and maybe she didn't know either. I do suppose she was republican, but I'll never know for sure. One thing was for sure; my mother was cosmopolitan. She was not a woman that enjoyed anything less than room service. No camping for her. She liked shopping and her favorite place was Stanford Shopping Center. She was a Raider fan. I think she'd be happy with this year's first-round draft pick. She went to a Suns playoff game with me a few years ago when they played the Spurs. History is repeating with the Suns right now, in case you don't follow sports. I think mom would have enjoyed the Spots 620 KTAR nose bandaids everyone wore at the game the other day. Two of her favorite stores were Sephora and Ulta. She liked comfortable shoes. She liked Anderson Cooper on CNN and "Everybody Loves Raymond." Her vice was chocolate. She'd be happy to know I'll be in Mexico this year on the anniversary of her death, having fun with my new family. She'd be absolutely fascinated with you all and to know all about the disease that killed her. Thank you for visiting my blog about CJD. Please leave a comment to tell me about your mother when you get a chance. Thank you.

--Heather Larson

Will I Make The CJD Family Conference?

This one is still up in the air. There are a few question marks circling my head right now and as soon as they are answered, I will know if I am able to make the CJD Family Conference in July. It's just a month and a half away!

Get More Info on the CJD Family Conference

I am desensitized to this madness.

I guess I no longer realize what a horrific disease CJD is. I'm a couple years removed from the experience and I've definitely moved on with my life. I do what I can for the cause of finding a cure whenever I have some free time, I blog, I speak, I help journalists, but I don't have time to do the kinds of things I'd like to do.

Tonight I was reminded how terrifying this disease is and how little the "normal people" know about it. I say "normal" meaning those who have yet to hear of CJD. A coworker and I were swapping stories about losing our parents. I was telling my buddy about identifying my mother's body post-autopsy after it was returned from New Mexico -- the nearest place where I could find someone to do her autopsy. We live in Phoenix. I told him how her body bag was marked "biohazard" in big black Sharpie pen letters. It blew his mind. I forgot this impact these stories have. They really need to be told more often to anyone who wants to listen.

Ouch. Over A Month Since My Last Post.

Ok, I do have big ideas for the blog backing up until I get some free time. That will likely get worked on during my Boston University summer break, which cannot come soon enough! So bear with me, more is to come, I promise.

I got my invite to the CJD Foundation Family Conference in July. I swear, this year I have to make it out there. Even if I'm in school because that's the meaning of attending college online.

I almost have a better excuse for not posting -- my weekend car accident. I was very lucky; after blowing out a tire going 65 mph on the 101 in the fast lane, I ended up with mere scratches. I'm also keeping my chiropractor's office and insurance company quite busy, not to mention anyone I know with a connection to cars I may want to think about purchasing. The car, a 1999 Ford Mustang, is a total loss.

Watch this spot for more news on my future car. More importantly, watch for more info about CJD soon!

What Would I Do with a Book About CJD?

Not that I have time to write a book about CJD if I don't even have time to make blog posts; Boston University keeps me busy. It's the kind of busy that made me want to lay by the pool a whole lot last week instead of keeping up my usual frenetic pace of working, schooling, and blogging. So I'm back now (and soon school will be as well) with a question: what on Earth would I do with a book about CJD?

Though it would make a good topic, how many people would really read a book about CJD? How on earth could this ever be marketed to anyone? Who would read this? What book publisher would take a risk on publishing something that only a small niche would be interested in reading? These are the questions I ask myself each day before tossing around the idea of just writing the book and then giving it a Creative Commons license.

Are there stories that need to be told? Absolutely. But how do I tell them? Which is the best way? That's what I've been thinking of this past week. Who wants to read a book on CJD? Could there be a more depressing book?

CJD Talk reaches 100 posts!

Hey! That last post I made today was my 100th post! Not too shabby. Thanks to the small audience I have for checking in with the blog! My hope is to use the blog to unite CJD families all over the world for networking purposes. I also want everyone affected by CJD who stops here to leave a comment -- leave a short comment or a long one, tell your story, or memorialize your loved one.

If you have a website or a blog, please let me know so I can post a link to it here. If you have a "CURE CJD" license plate, please take a photo and send it to me so I can post it. And same thing goes for is you have a sticker, t-shirt, magnet, or bracelet for sale to raise money. Anything you're up to in the fight to cure this disease is something I want to blog about.

It is my goal to use this blog to show how many people CJD affects and how. I can't do that without your help!

For example, if mad cow disease hits the news again, if a cow tests positive for BSE in America again, then people will be online searching for terms like "CJD," "mad cow disease," "TSE," and "BSE" just to name a few. If people happen to come across this blog in a search, I want them to see how many people care about CJD.

So please, keep in touch. You may e-mail me at: heatlarson AT yahoo DOT com, or you can leave a comment.

Thought for the Day:

If a tree falls in the forest does it not make a sound? Just because no one is there to hear it, doesn't mean the sound does not exist, right?

Just because CJD hasn't happened to someone you know yet doesn't mean it won't. Just because we test a few cattle a year for BSE without positive results doesn't mean the millions not tested don't have it. Just because we don't know about how to cure CJD yet doens't mean the cure doesn't exist. Just because we can't see CJD in the blood supply doesn't mean it isn't filling bag of blood waiting to be transfused into needy patients.