Cure CJD

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

Gathering CJD Medical Records

It is 2012. My mom died in 2004. That means nearly eight years have passed since her death. Recently, it dawned on me to gather her medical records for the greater good and submit them to various research projects, basically, whatever I can find. (And I mean ‘whatever I can find’ both in terms of research projects and in terms of medical records). 

Try to gather medical records after eight years. Just try. Most places mandate you can destroy records after just seven years. 

The moral of the story is to gather the records of your loved on who has died of CJD as soon after their death as possible, even if you don’t think you will EVER do anything with them. You just might need them. Perhaps down the line another family dies of CJD and you therefore have reason to suspect it is genetic (familial or fCJD). That’s what happened in our case, sort of. 

You can always keep medical records for your own purposes, just to have a copy for your own needs at any point in your life. If you wish, you can always copy them to send to research institutions. 


April 11, 2012 - Posted by | Uncategorized


  1. My mom is lying in a hospital bed in Detroit. I didn’t even hear of CJD until last week. Now my mom lies in a hospital bed unable to communicate or walk or even feed herself. This is a horrible disease and it’s so hard believe there is no known cure

    Comment by Bruce Edwards | July 16, 2012

  2. Hi Bruce,

    I’m sorry to hear about your mom. Please know that there are people who know what you’re going through and many working on the cure right now. I have friends lobbying on Capitol Hill today to ask their representatives for more funding. You are not alone. We are with you.

    Comment by CureCJD_Heather Larson | July 16, 2012

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