CJD Foundation Conference

The CJD Foundation conference is rapidly approaching, and I hope that you all are planning on attending this weekend, July 10-12. I am looking forward to talking with Marisa and other staff from the CJD Foundation, and I hope that any of you in attendance will seek me out as well. While this conference is not about me, or the Association for Prion Disease Advocacy, I would appreciate any insight, opinions, or advice you can offer me about the focus and future of the APDA.

The internet has been buzzing recently over a Journal of Alzheimer's Disease article regarding the possible risk of BSE transmission through farmed fish. I largely ignored it, as the information is purely speculative; however, since I am finding references to it everywhere, I suppose it is worth a mention. The concern stems from the fact that farmed fish are sometimes fed pellets rendered from cows. The disease has not been shown to transmit to fish, although it is believed that an animal (or fish) does not have to be infected with the disease to transmit it. The abstract can be found here.

An article on grist.org points out the shortcomings of legislation currently in congress regarding the meat packing industry.

The Calgary Herald reports that the University of Calgary will be opening a research facility to investigate the causes of BSE and other prion diseases. The facility will be studying prion diseases in humans and other animals, although it seems the primary focus will be livestock and controlling the spread of Chronic Wasting Disease (CWD). Hopefully, the research will also provide insight into the causes of CJD.

Finally, I believe the Food Safety Working Group will be releasing its findings sometime today. If this is in fact the case, I will pore over the findings in the next few days and give you a run-down as soon as I can.

More Articles of Interest

This article is about a House bill drafted by the U.S. House Energy and Commerce Committee addressing food safety issues. I will be poring through the bill to see what it includes that is relevant to us, and hopefully writing some letters to the committee either in support or opposition - depending on what it says. Or asking that they include other provisions to safeguard against BSE.

This article discusses alternative remedies, and the odd ingredients often included. It just goes to show you should always read the labels of supplements before you take them. Many include bovine proteins or tissue known to be particularly infections in a BSE infected cow.

And finally, an article discussing how rogue proteins may also be responsible for Alzheimer's.


The website is coming along very well. The test site is almost perfected, which means the launch date will be soon! Once it is up and running, I would appreciate any and all feedback - negative and positive.

Articles of Interest

I apologize for the delay in postings, but I have been out of town with limited access to the internet. I am now back, and busy sorting through my inbox.

-From Fooddemocracy.com, an article explaining the implications of a recent cow found to have BSE in Canada.

-An Associated Press article discussing the Food Safety Working Group, and Rep. Rosa DeLauro's objections to some of the FDA's propsed changes.

-An article published in the British Medical Journal discussing the recent findings of a study which tested over 63,000 tonsil samples for vCJD. None of the samples tested positive, raising the question of whether vCJD may end up affecting fewer people than previously thought.

Bone Marrow Donation

As I am sure most of you out there in the CJD community know, blood relatives of CJD sufferers are prohibited from donating blood or organs, even if it is not a genetic form of the disease. While I know (and respect) that this is done in an abundance of caution, it still bothers me that I am prohibited from helping others because of a disease I will most likely never get. If you feel this way too, I would encourage you to look into joining the bone marrow donor registry. At this time, there is no prohibition donating bone marrow. You can visit the National Marrow Donor Program website for more information.

Secretary Sebelius Statement at Food Safety Working Group

I found this article, which has a transcript of the statement Health and Human Services Secretary Kathleen Sebelius made to the Food Safety Working Group yesterday. I personally am encouraged that she seems to recognize the importance of prevention over damage control. Her remarks are fairly short and worth the read.

Food Safety Working Group

President Obama's Food Safety Working Group had what I believe to be its first meeting yesterday. I am waiting for audio to be put online, as I missed the live stream, but I want to direct you all to their new website. You can subscribe to email updates, and it also directs to places you can make comments or suggestions for the group to consider. I am working on getting some requests together to submit, and any concerns you would like to see addressed are welcome too. Either submit on your own, or let me know and I will try and include them with mine - or both.

Website

We're running a little behind schedule to get the website up and running, but the prototype looks great! I am working on getting the information together to put on it, and hopefully it will be operational in the next few weeks. More information to come!