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The video that Eric Minikel and Sonia Valladh made to introduce and launch the prion registry at the CJD Foundation conference recently is now on U Tube and posted on the CJDISA website.http://cjdisa.com/news-events/
An opportunity to assist with prion disease research
cjdisa.com
We are very excited to announce the launch of a patient registry for patients, family members, those at risk and those who would like to assist by being a control. Please watch the video by Eric Minikel and Sonia Valladh announcing the launch of the prion registry at the CJD Foundation conference on...
I am sharing the posts by Lori Nusbaum from the CJD Foundation USA. Funding for prion disease has been lined out of the budget in USA and if not reinstated this would mean the end of surveillance for prion disease in USA and many countries could follow.
If you are in USA or have family or friends living there please encourage them to contact the CJD Foundation and help advocate for this funding to continue.
From Lori:
Now is more important than ever to write to your representatives - and we'll be posting why - Please write to us at help@cjdfoundation.org so that we can send you the key messages. Funding for the NPDPSC must continue and here is reason #1
www.jsonline.com/story/sports/columnists/paul-smith/2017/06/28/macaque-study-heightens-concerns-h...
Smith: Macaque study heightens concerns about human susceptibility to CWD
Reason #2: The case of BSE found in the story below is a naturally occurring form, or atypical, meaning it occurred naturally, or spontaneously. It underscores the importance of human surveillance. With no surveillance we would not have known about this, and therefore it could have ended up in the food chain. We CANNOT allow the US Surveillance Center to shut down - which is what could happen if prion disease surveillance is not restored in the budget. email help@cjdfoundation.org. We'll give you a template to use so that you can write to your senators and representatives. www.bloomberg.com/news/articles/2017-07-18/-atypical-mad-cow-disease-found-in-alabama-animal-u-s-...
‘Atypical’ Mad Cow Disease Found in Alabama Animal
We are feeling a bit of hope on the House side -- we understand that as of late afternoon yesterday things are looking better on the house side, however, we cannot stop and we now need to continue our battle on the Senate side - and here is REASON #3: As in the study in macaques, we've learned that CWD crossed the species barrier in an experimental study in pigs. This is NOT the time to stop surveillance in the US! jvi.asm.org/content/early/2017/07/06/JVI.00926-17.abstract
Experimental transmission of the chronic wasting disease agent to swine after oral or intracranial inoculation
CJD Support Group Network shared Prion Alliance's photo.
Today we are proud to launch a new clinical research study with collaborators at Massachusetts General Hospital! This study, funded by your donations to Prion Alliance, is now recruiting people at risk for genetic prion disease, and controls, to donate cerebrospinal fluid for studies of biomarkers in prion disease. Learn more and participate: www.prionalliance.org/2017/07/19/prion-alliance-sponsors-mgh-research-study/
If you want to have the opportunity to assist with prion disease research we are very exited to announce the launch of a patient registry for patients, family members, those at risk and those who would like to assist by being a control. I am attaching the video by Eric Minikel and Sonia Valladh. This is a collaborative initiative supported by the CJD Foundation USA and the CJD International Support Alliance of which Deana Simpson and I are co-chairs. Please see the separate post where Eric and Sonia announced the launch at the CJD Foundation conference last week end in Washington DC.
Announcing prionregistry.org : an online portal to connect patients & people at-risk w/ opportunities to participate in prion research
We are committed to helping our friends in USA who are advocating
with the help of the CJD Foundation to overturn what would be a tradegy for the whole CJD global community not just those in the USA.
www.postbulletin.com/opinion/our_view/our-view-lab-s-funding-is-important-public-health-issue/art...
Our View: Lab's funding is important public health issue
postbulletin.com
Fifteen years have passed since the Milwaukee Journal Sentinel published an article with this alarming headline: "Did wild game feeds lead to fatal brain disorders?"
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