Monday, March 30, 2009
Past Two Weeks
I am sorry (and a little shamed) to admit that I have not accomplished much in the past two weeks. I made a lot of good progress and then just kind of stalled. Part of it is that I was out of town for a wedding for several days, and it was difficult to start a project knowing I was going to be interrupted in the middle of it. I have pretty much just been trying to catch up on some reading (work reading, not casual reading) and planning my next steps. I promise to be back on top of things from here on out! I have a meeting with my website designer on Wednesday to start figuring out what we are going to do with it. I will hopefully have some good things to report soon.
Tuesday, March 17, 2009
Updates on Organization Development
Yesterday, I had a great discussion with Marissa of the CJD Foundation. It turns out she had already found my blog, and was therefore expecting my phone call. We had a good conversation about what I am trying to do, what the CJD Foundation is trying to do, and what they are legally able to do within the parameters of their non-profit designation.
A main point I took away from this conversation is that if I want to turn my advocacy efforts into a paying position, which is ultimately my goal, I will need to form my own organization. This being the case, I am going to need to find a lawyer with experience in non-profits to determine exactly what designation I will need to obtain from the IRS. While I suspect it will still take considerable time before I am able to raise enough money to pay myself a salary, getting the ball rolling on forming the organization will hopefully speed things up down the road.
Today, I spoke with contacts at both the CDC and the National Prion Disease Pathology Surveillance Center in an effort to find a detailed list of state reporting requirements. I was not able to get specifics from each state, but I now have in my posession a list of whether or not the state has reporting requirements. It appears I am going to need to call each state's health department individually to find out more specifics. It's going to take some time, but I really think having this information will be beneficial to determine where we need focus our efforts.
Things seem to be moving along nicely, and I am very thankful for the positive reception I have received so far. I am looking forward to being involved in something I care so much about!
A main point I took away from this conversation is that if I want to turn my advocacy efforts into a paying position, which is ultimately my goal, I will need to form my own organization. This being the case, I am going to need to find a lawyer with experience in non-profits to determine exactly what designation I will need to obtain from the IRS. While I suspect it will still take considerable time before I am able to raise enough money to pay myself a salary, getting the ball rolling on forming the organization will hopefully speed things up down the road.
Today, I spoke with contacts at both the CDC and the National Prion Disease Pathology Surveillance Center in an effort to find a detailed list of state reporting requirements. I was not able to get specifics from each state, but I now have in my posession a list of whether or not the state has reporting requirements. It appears I am going to need to call each state's health department individually to find out more specifics. It's going to take some time, but I really think having this information will be beneficial to determine where we need focus our efforts.
Things seem to be moving along nicely, and I am very thankful for the positive reception I have received so far. I am looking forward to being involved in something I care so much about!
New York Times Op-ed on Proposed Animal Tracking
Thanks to Marie for pointing out this op-ed to me. A few days ago I directed you to this article, which discusses the efforts by several congressman to implement a livestock tracking system. The ope-ed, from the New York Times, is by a small farmer and discuses the implications of this proposal on small farmers. It is definitely worth the read, just ensure you know both sides of the issue.
Monday, March 16, 2009
Ban on Downer Cows
President Obama has made permanant the ban on downer cows in the food supply, according to this MSNBC article. The article mentions the risk downer cattle pose of contaminating the food supply with BSE. President Obama is also working to update food safety laws through the creation of the Food Safety Working Group and has appointed Margaret Hamburg as the Food and Drug Administration commissioner.
I'm trying to find some more information on the Food Safety Working Group to see what exactly their mission is and how it might be beneficial or detrimental to what I'm working on here. I'll keep you updated as I find out more. Thanks to my mom for pointing out the article.
I'm trying to find some more information on the Food Safety Working Group to see what exactly their mission is and how it might be beneficial or detrimental to what I'm working on here. I'll keep you updated as I find out more. Thanks to my mom for pointing out the article.
Friday, March 13, 2009
Interesting Articles
I came across several interesting articles on Reuters.com today. The first is actually from early February, and discusses the possibility of a blood test to identify BSE in cattle before they are symptomatic. They have already had success with the test in identifying CWD in elk. The second is discussing the finding from a clinical trial of quinacrine for CJD patients. Let's just say it didn't go well. The final article discusses several congressmen's attempts to develop a cattle tracking system. This would enable them to trace cattle movements throughout their lives. If a cattle is later found to have a transmissible disease, such as BSE, determining where they may have contracted it and what other animals may have been exposed will become possible.
Tuesday, March 10, 2009
New Features
I just want to point out a few features I just added to the blog. On the righthand side of the screen, you can find links to a few other websites which will give you more information on CJD and prion diseases. Also on the righthand side, I have added a feature which will allow you to become a follower of the blog.
I created a facebook group for prion disease advocacy. A lot of the information on the two sites will most likely be similar, but I wanted to have several avenues for people to find out about this and remain updated. If you are also on facebook, please join the group and let other people who are interested know about it as well. I would like to reach as many people in the community as possible. If no one knows about it, they can't help!
I created a facebook group for prion disease advocacy. A lot of the information on the two sites will most likely be similar, but I wanted to have several avenues for people to find out about this and remain updated. If you are also on facebook, please join the group and let other people who are interested know about it as well. I would like to reach as many people in the community as possible. If no one knows about it, they can't help!
Variant CJD in Spain
In my efforts to keep you updated on prion disease news, I will post links to relevant articles I find online. If anyone comes across something online you think is of interest, please feel free to either post it in the comments section of the blog, or email it to me at ptennant@priondisease.org. The first is an article from cnn.com, regarding a recent death from vCJD in Spain. Thanks to Denise for sending that along to me.
The second is a press release put out by the Canadian Wildlife Federation regarding the status of Chronic Wasting Disease. The full report is available if you email Leigh Edgar at leighe@cwf-fcf.org. The report itself is 25 pages. I have a copy of it which I am in the process of reading through and will provide you with my thoughts shortly.
Finally, things are slowly but surely moving along here on my end. My step-mother and I had a very long talk last week about my ideas for this organization, and she was very helpful and insightful. I am now trying to get my thoughts together before I approach the CJD Foundation. It is a little bit of an intimidating step - presenting my ideas to people who work in the field and aren't related to me or my close friends. I have high hopes that they will be receptive and as positive as everyone else has been. More to come on this later!
The second is a press release put out by the Canadian Wildlife Federation regarding the status of Chronic Wasting Disease. The full report is available if you email Leigh Edgar at leighe@cwf-fcf.org. The report itself is 25 pages. I have a copy of it which I am in the process of reading through and will provide you with my thoughts shortly.
Finally, things are slowly but surely moving along here on my end. My step-mother and I had a very long talk last week about my ideas for this organization, and she was very helpful and insightful. I am now trying to get my thoughts together before I approach the CJD Foundation. It is a little bit of an intimidating step - presenting my ideas to people who work in the field and aren't related to me or my close friends. I have high hopes that they will be receptive and as positive as everyone else has been. More to come on this later!
Tuesday, March 3, 2009
Ideas, Parts III and IV
The past week has been a little frustrating, as I have struggled to find the information I need online while trying to determine the best way to take the next step in starting the organization. I don't seem to be making much progress on either front. I'm just trying to be patient and keep reminding myself that things don't happen overnight.
I now bring the third and fourth (final) installment of my ideas for the organization. I am certain I will have more ideas later on, but these are the ones I have developed to the point of sharing.
1. Advocate better testing for Bovine Spongiform Encephalopathy (BSE) and stricter requirements on the sale of beef.
Public health is at risk due to insufficient testing requirements for BSE in the United States. The CDC reports that three cases of BSE have been found in the United States to date.[i] While no products derived from these known cases have made it into the food supply, the United States Department of Agriculture (USDA) provides testing for only a small percentage of all cattle slaughtered in this country. Current surveillance efforts are focused in herds where a BSE is most likely to be found.[ii] From a statistical standpoint, the sampling methodology and frequency may be inadequate to ensure public safety. The incubation period of the disease is long enough that many cattle may be suffering from the disease yet not show any symptoms, thus giving infected cattle ample opportunity to enter the food supply and endanger the general public.
Many similarities can be drawn between the current U.S. government denial of a problem and the reactions of the British government before the mad cow outbreak in the U.K in the 1980’s. The British government’s denial of a human health risk and subsequent lack of action caused the exposure of millions of citizens to BSE.[iii] In order to ensure the U.S. government does all it can to protect the public health and that no BSE cattle enter the food chain, all cases of BSE infection must to be publicized as extensively as possible. Identifying knowledgeable and reliable sources in the media who are willing to keep a spotlight on these issues is a key goal of the APDA.
While many regulations have been put in place to help protect the public, they are only effective if properly followed and applied. Feed bans and slaughterhouse procedures must be strictly followed to ensure the safety of the food supply. The organization will compile data on regulations and inform the public of violations, as well as work to improve oversight in areas where it is lacking. Organizations who compile this information already exist, and the APDA will build relationships with these organizations to assemble more thorough and relevant information.
The U.S. government lags behind Europe in restricting the sale of certain parts of cattle known to be the most infectious, i.e. brain, intestines and mechanically recovered meat. There are no restrictions on the use of bovine protein in drugs or protein supplements for humans.[iv] Additionally, it is still legal in the United States to include chicken droppings in cattle feed. Chicken feed often includes bovine protein, and prions have been shown to survive excretion, creating a scenario where prions could potentially reenter the bovine food supply and spread infection.[v] These areas are major sources of concern, and the organization will strive ensure these poor industry policies and practices are corrected.
2. Public Advocacy
A significant problem facing the prion disease community at this time is the lack of public knowledge about these diseases. The only information most people have about prion disease comes from BSE, and many only know it as “mad cow disease.” To increase public awareness, the organization will write letters to the editors of small and large papers and publications around the country. As the standing of the organization around the country increases, larger papers will be more likely to print our letters and press releases. In the meantime, the APDA will concentrate on writing to smaller papers in communities with CJD cases. The affected families in these communities will be consulted, as they may prefer to write the letters themselves.
As funding allows, the APDA will explore television and radio advertising to reach a large audience. This can be very costly, particularly to a small, start-up organization, but the benefits will far outweigh the costs.
The organization will provide information to the public on the organization’s mission and ongoing projects through the website (www.priondisease.org) and blog (currently at www.cjdadvocacy.blogspot.com, but will be relocated to website at a later date.) The APDA website will also host a moderated forum where site visitors can post their ideas and also find links to other prion disease-related sites.
[i] Centers for Disease Control website, About BSE http://www.cdc.gov/ncidod/dvrd/bse/ (February 13, 2009).
[ii] USDA publication USDA’s BSE Surveillance Efforts http://www.aphis.usda.gov/publications/animal_health/content/printable_version/fs_BSE_ongoing_vs.pdf (February 13, 2009).
[iii] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 172-82
[iv] Max, 219
[v] Max, 219
I now bring the third and fourth (final) installment of my ideas for the organization. I am certain I will have more ideas later on, but these are the ones I have developed to the point of sharing.
1. Advocate better testing for Bovine Spongiform Encephalopathy (BSE) and stricter requirements on the sale of beef.
Public health is at risk due to insufficient testing requirements for BSE in the United States. The CDC reports that three cases of BSE have been found in the United States to date.[i] While no products derived from these known cases have made it into the food supply, the United States Department of Agriculture (USDA) provides testing for only a small percentage of all cattle slaughtered in this country. Current surveillance efforts are focused in herds where a BSE is most likely to be found.[ii] From a statistical standpoint, the sampling methodology and frequency may be inadequate to ensure public safety. The incubation period of the disease is long enough that many cattle may be suffering from the disease yet not show any symptoms, thus giving infected cattle ample opportunity to enter the food supply and endanger the general public.
Many similarities can be drawn between the current U.S. government denial of a problem and the reactions of the British government before the mad cow outbreak in the U.K in the 1980’s. The British government’s denial of a human health risk and subsequent lack of action caused the exposure of millions of citizens to BSE.[iii] In order to ensure the U.S. government does all it can to protect the public health and that no BSE cattle enter the food chain, all cases of BSE infection must to be publicized as extensively as possible. Identifying knowledgeable and reliable sources in the media who are willing to keep a spotlight on these issues is a key goal of the APDA.
While many regulations have been put in place to help protect the public, they are only effective if properly followed and applied. Feed bans and slaughterhouse procedures must be strictly followed to ensure the safety of the food supply. The organization will compile data on regulations and inform the public of violations, as well as work to improve oversight in areas where it is lacking. Organizations who compile this information already exist, and the APDA will build relationships with these organizations to assemble more thorough and relevant information.
The U.S. government lags behind Europe in restricting the sale of certain parts of cattle known to be the most infectious, i.e. brain, intestines and mechanically recovered meat. There are no restrictions on the use of bovine protein in drugs or protein supplements for humans.[iv] Additionally, it is still legal in the United States to include chicken droppings in cattle feed. Chicken feed often includes bovine protein, and prions have been shown to survive excretion, creating a scenario where prions could potentially reenter the bovine food supply and spread infection.[v] These areas are major sources of concern, and the organization will strive ensure these poor industry policies and practices are corrected.
2. Public Advocacy
A significant problem facing the prion disease community at this time is the lack of public knowledge about these diseases. The only information most people have about prion disease comes from BSE, and many only know it as “mad cow disease.” To increase public awareness, the organization will write letters to the editors of small and large papers and publications around the country. As the standing of the organization around the country increases, larger papers will be more likely to print our letters and press releases. In the meantime, the APDA will concentrate on writing to smaller papers in communities with CJD cases. The affected families in these communities will be consulted, as they may prefer to write the letters themselves.
As funding allows, the APDA will explore television and radio advertising to reach a large audience. This can be very costly, particularly to a small, start-up organization, but the benefits will far outweigh the costs.
The organization will provide information to the public on the organization’s mission and ongoing projects through the website (www.priondisease.org) and blog (currently at www.cjdadvocacy.blogspot.com, but will be relocated to website at a later date.) The APDA website will also host a moderated forum where site visitors can post their ideas and also find links to other prion disease-related sites.
[i] Centers for Disease Control website, About BSE http://www.cdc.gov/ncidod/dvrd/bse/ (February 13, 2009).
[ii] USDA publication USDA’s BSE Surveillance Efforts http://www.aphis.usda.gov/publications/animal_health/content/printable_version/fs_BSE_ongoing_vs.pdf (February 13, 2009).
[iii] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 172-82
[iv] Max, 219
[v] Max, 219
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