CJD Activism

The goal is to find the cure.

My Involement in CJD-Related Issues
I’m very interested in finding the cure for CJD, the disease that killed my mother in 2004. Naturally, I write a great deal about it. I’ve written an article for Veg News Magazine about why I became a vegan after her death. (I am no longer vegan). CJD is short for Creutzfeldt-Jakob Disease — the human form of mad cow disease. You can learn more about it by visiting the CJD Foundation’s website.

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 because there is a
lot available. I recently 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 e-mail me to find out more. I’m happy to answer any of your questions.

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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