CJD Writing & Research

The goal is to find the cure for CJD — or die trying. 

CJD is short for Creutzfeldt-Jakob Disease — the human form of mad cow disease. You can learn more about it by visiting the UCSF Memory & Aging Center’s website. My main focus is on genetic CJD, also called familial CJD or fCJD. Our family mutation is e200K and I’m currently working to trace it back to Poland with suspicions our mutation may date back to what is modern-day Belarus. To further my research, I am learning Polish and working to obtain my second citizenship there, which you can read more about on my AspiringExpat.com blog.

USCF Memory & Aging Center Research with Dr. Geschwind

In 2012, I signed up to become a “guinea pig” at the UCSF Memory & Aging Center with Dr. Michael Geschwind. It was there I enrolled in a lifelong research study about fCJD at a very young age. Whether or not I am positive for our family’s e200K mutation, I am still a part of the project. I also don’t need to know my genetic tests results to participate. Millions aren’t being poured into CJD research so I did have to pay my own way. I hope this will change some day so more will participate!

Learn more about the studies USCF is doing and how you can enroll here.

My Involement in CJD-Related Issues
I’m very interested in helping to find the cure for CJD, the disease that killed my mother in 2004. Naturally, I’ve been writing a great deal about it since 2005. I wrote an article for Veg News Magazine about why I became a vegan after her death. (I am no longer vegan; I gave it up in 2009). I began eating beef in recent years, which is another story for another day.

Helping Journalists Understand & Cover CJD-Related Issues
I also help other journalists write stories on CJD by providing sources to interview and resources on all kinds of research. I edited the article Prions: Transmissible Spongiform Encephalopathies and Dental Transmission Risk Assessment by Janice Hamilton for CDA Journal, Vol 35, No 1.

When a story about “mad cow disease” hits the media, I am always available to help journalists obtain sources, find accurate information, and ask the right questions of experts.

Please email me to find out more at: TheWriterHeatherLarson [at] ProtonMail [dot] com. I’m happy to answer any of your questions and serve as a source.

My Writing About CJD Online
I wrote a couple articles for the Paradise Valley Community College Puma Press:

  • Jeff Schwan died in his 20s of CJD right here in America. His mother and aunt are friends of mine.
  • My mother died of the E200K mutation of fCJD in 2004 at the age of 56, the youngest to die of CJD in her family to my knowledge.
  • I kept a blog after my mother’s death about CJD called CJDTalk. If was my first CJD blog. The current one can be found at CureCJD.wordpress.com.

Volunteer Work I Do
I volunteered in 2007 for the CJD Medical Education project run by the CJD Foundation, which means I was fortunate enough to have a few minutes to speak to the physicians at Barrow Neurological Institute when Dr. Sejvar of the CDC made a presentation. I spoke of the importance of encouraging families to use our National Prion Disease Pathology Surveillance Center (NPDPSC), which provides free autopsies to families with a suspected case of CJD.

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