Cure CJD

Heather Larson's experiences in helping find the cure for CJD

Another victim of a “rare” brain disease, Michelle Laven, dies

I was struck by this article because the CJD victim in it, Michelle Laven, is so young. It also stands out that her husband says her symptoms only began 28 days prior. And the heartbreaker of the article — Laven leaves behind two sons, ages 8 and 12. This is the most unfair thing I have read in ages. The article is not just worth reading. It also is worth seeing. You need to see the photo that accompanies it. There is even a heartbreaking video you just won’t be able to watch with dry eyes. Kudos to Kip Laven for contacting KARE 11 and asking for this story to be told.

Just one thing — can we ditch the tired 1/1 million statistic yet? I still think of 1/1 million as lottery odds; CJD has happened twice in my family. Some lottery to win, right? I know our lot in life is genetic CJD. But still. What are the odds of two people in a family dying of it, genetic or not? When you make it just a number game, the 1/1 million isn’t very meaningful. I wish we could leave it out of every news story. Sorry, but I’m bitter with Mother’s Day coming up. Happens every year.

We need more stories like this one about Michelle and Kip Laven. He talks about how he and the boys couldn’t even get into her computer because they didn’t know the password. We went through the same thing with my mom! By the time you know there’s no turning back and death is close, it’s always too late to say what you need to say, ask the right questions, find out where that spare key was hidden…

A community in Minnesota is wiser now about this disease. Those of us who are sharing it on Facebook and Twitter and our blogs are also helping to get it out there, searchable for all to see who may come across it somehow. Stories like this need to be told and repeated. I see so many similarities between Michelle Laven’s story and that of my mother. My mother also died quickly of CJD and left behind a loving family who had to endure watching someone they love go through horrible suffering.

What those left behind go though is also awful. It’s terrible to see your mother suffer like this, to not know what is making her sick, to not realize until the very last minute that she is about to die. It’s horrendous to not be able to say goodbye to her. It’s awful to not know if she can hear or feel you because she is not responding. You feel helpless. You are told there is no cure. You feel even more helpless. You watch a healthy women stop eating, stop speaking, stop living, lying flat on her back in a hospital, tested for everything, and told nothing.

Tell me where is the dignity in this? There isn’t. You do your best. But in a moment, your life as you knew it is over. You’re left without the most important person in your life and unsure why no one has found the cure yet. Where is the answer? Why are young people dying of this and leaving behind young children? Why? This is unacceptable. As unacceptable as it was in November of 2004 when my mom died.

We can do better. We can do better at everything regarding CJD. We can make others care. A few days ago, I saw 300 people in the South died in one day because of a tornado. Everyone cares about that! But 300+ die annually from CJD (supposedly, according to current statistics anyway). So let’s get people to care about that. Keep up the fight. Keep it on your Twitter, your Facebook, your blog. Raise money. Raise awareness. Make people know CJD. Do what the Laven family has done and call the news. May there be video and photos like this. You know damn well if I die of this too, I will make sure there is video and photos left behind.

The Laven family is in my prayers. I admire their bravery in sharing their story. I wish I’d had myself together enough to do the same in 2004. If there had been Twitter, Facebook, and Flipcams back then, I know I would have accomplished a lot.

@heatherlarson #CURECJD


May 2, 2011 - Posted by | Uncategorized


  1. Heather, beautifully put together. Awareness and exposure is key in order to bring attention to a neglected disease. Carmen

    Comment by Carmen | May 9, 2011

  2. see.
    March for the details of what the UK really knows about how BSE in cattle becomes nvCJD in humans. Several peaceful marchers threatened with arrest including weeping 74 year old mother who lost her son Organiser Christine Lord who lost her son is constantly monitored by UK security services (see
    The key to first a test,then possibly a cure is for the truth about how this disease in animals came to infect humans is held by the UK authorities who refuse to tell the truth.

    Comment by bell | May 15, 2011

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