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March 2008 Newsletter by Marisa
December 21, 2007 01:59 PM

Conference Information
Our Sixth Annual CJD Foundation Family Conference will be held, once again, at The Washington Court Hotel on Capitol Hill. The conference will be held July 11-13, 2008, and on Monday, July 14 we will arrange meetings with individual representatives on Capitol Hill for those who would like to participate.

We have an impressive list of presenters this year. For the first time we are partnering with the National Prion Disease Pathology Surveillance Center and PrioNet Canada to offer the first North American CJD Conference!

Please save the date! Registration forms and details will be mailed out at the beginning of April. We hope to see you there!

In order to make our conference as affordable as possible we will not be raising our registration fee. We are offering an opportunity for families to sponsor a coffee break, or a meal. Sponsors will be acknowledged by signage and mentioned in the conference binders. For further details or if you would like to sign up as a sponsor please contact Marisa at marisa@cjdfoundation.org or 1-800-659-1991.

Friday, July 11, 2008
Wine Reception - $1,000

Saturday, July 12, 2008
Breakfast - $2,000
Coffee Break - $500
Lunch - $3,000
Dinner - $5,000

Sunday, July 13, 2008
Breakfast - $2,000
Coffee Break - $500
Lunch - $3,000

GoodSearch
Hopefully you received our email detailing a small and simple way you can help The CJD Foundation through a free service called GoodSearch.com. Instead of using other search engines, you can use GoodSearch.com and we will receive a penny for each search you complete. I know this does not sound like a lot, but it will add up if we work together and spread the word to our friends and family. You can use it as your primary search engine or add it to your toolbar so you will not forget to use it. We are using it on our computers at the office and it works just like the Google or Yahoo search engines.

Washington Report from Florence
On Thursday and Friday, March 6th and 7th, Dr Gambetti and I visited Capitol Hill. Our focus was on human surveillance and the even more critical role it has now that we know “downer cows” were proven to have entered the food supply. On Friday afternoon we met with Ed Schafer, USDA Secretary, and some of his Under Secretaries. I’ve attached my report. My sense is that these meetings, at this time, held more potential for change because of the spotlight placed on the meat packers. We were invited to return to Washington for a meeting with the Labor HHS subcommittee.

October Newsletter by marisa
October 16, 2007 09:59 AM

Dear Friends,

I have just returned from two very interesting and very different meetings. The first was the NeuroPrion2007 scientific conference held in Edinburgh Scotland, September 25-28 and the second was an NIH Advisory meeting held to discuss the current peer review process and to solicit concerns and suggestions for possible improvement.

One very significant theme discussed by researchers at the scientific meeting in Edinburgh is the growing theory that the infectious protein long considered to be the cause of CJD, may actually be the result of some other mechanism, sometimes referred to as a "chaperone" or a "trigger."

Tracie Kedzierski, Graham Steel and I represented both the CJD Foundation and The CJD International Support Alliance at this meeting. Family support representatives from the International Alliance were Suzanne Solvyns and David Ralston and David's wife Lynn, all from Australia, Gillian Turner who brought two family members from the United Kingdom and our newest Alliance members, Roberto Borgis and Angela Chille and Angela's husband, Frederico.  Roberto and Angela and 10 other family members had traveled to Genoa, Italy the week before the meeting to sign an official proclamation which was the legal beginning of the Italian CJD support organization, the "Associazione Italiana Encephalopathie Da Prioni."  Roberto is President and Angela is Vice President. It is impossible to tell you just how proud we are of them!

There were approximately 600 researchers in attendance at this meeting. Suzanne Solvyns and I were invited to speak on behalf of you, the patients and families.  My talk focused on the work of both the CJD Foundation and the CJD International Support Alliance (CJDISA) and how we go about supporting those in need of our help. Suzanne talked about her personal journey as one of the recipients of a batch of contaminated fertility hormones. We were not only honored to be asked to speak to this group but also very gratified by the response. Three researchers, one from Israel, one from Argentina and one from France approached us to ask about either forming a group to join the CJD International Support Alliance or, in the case of Dr. Gabizon from Israel, if her group, already in existence, could contact us about joining.

The NIH "Consultation" meeting, one of a series of three being held, for convenience, in three cities was to discuss the problems of the current peer review process. In many ways it was reassuring to hear the problems discussed in a very honest and open way and know that the NIH understands the current process may have outlived its usefulness. I will keep you apprised of the results or changes made after all the results from the three meetings have been evaluated.

The next meeting I am attending is being held in Vancouver, British Columbia in early November. I was asked, once again, to speak on your behalf. It is truly an honor and a challenge to be invited to speak to a group of scientists. This meeting is being co-sponsored by PrioNet Canada with the support of Dr. Pierluigi Gambetti and the National Prion Disease Pathology Surveillance Center.

The goals as proposed by PrioNet Canada are "to bring together European and North American research and health care professionals to exchange information regarding CJD surveillance, diagnosis and treatment and to foster further interactions between our organizations and our family support organization, the CJD Foundation."  It is truly rewarding in every sense to be acknowledged in this way!

November 12 is International CJD Day. We hope to sponsor CJD awareness walks all over the U.S. These "Footwork for CJD" walks are being held to educate and raise community awareness about CJD.  Many of our families are planning to sponsor a walk and we are hoping to add more of you to the list. If you would like to plan a walk in your area or would like more information please contact Marisa at marisa@cjdfoundation.org.

Our work and our responsibilities are rapidly expanding. We are hoping to develop a public relations campaign to call attention to CJD research funding and the need to foster continuous innovative thinking in the search for treatments and a cure for CJD.

As I attend scientific meetings I am truly impressed by the caliber of research being carried out by many brilliant scientists. Last September we awarded our first CJD Foundation Scholarship consisting of grants from family members totaling $20,000.00.  Dr. Wen-Quan Zou, the recipient, gave a report about his work at our conference in July and an update in Edinburgh.

He and his team have detected a silent protein in the normal brains in mutant and wild type mice which was then detected in human biopsies during the early stages of CJD. This may represent the first stage of change in normal proteins and thus lead to an early detection test. His research is very promising and we are gratified to have contributed to this important work.

Well, as usual, my report is too long!  We are working on a newsletter format which will incorporate and present information by topic. I hope this will be easier to read and will allow us to give you the opportunity to post your comments and feedback.

I send you all my regards and hope to hear feedback from you.

My best regards,

Florence
florence@cjdfoundation.org

July Newsletter by marisa
July 31, 2007 09:47 AM

                                                   CJD Foundation Family Conference Report, 2007
                                                                           July 30, 2007


I want to apologize for the very long delay in sending you this report. It has been a work in progress since July 10!

The fifth annual CJD Foundation Family Conference was held in Washington D.C., July 6-9, 2007. This year we had our largest attendance including family members from all over the United States, Italy, The United Kingdom, Australia and Japan. As in the past, we were very fortunate to hear about the most current prion research from many of the world's leading scientists.

One of the most important benefits of the conference was the opportunity to meet other family members. We began the conference with a memorial service. Those families attending submitted the names of loved ones they had come to honor. As each name was read a flower was placed in a vase which remained at the front of the room during the conference.

Scientific Presentations included; an overview of the work of the National Prion Disease Pathology Surveillance Center, progress in the development of a diagnostic blood test, work being developed to distinguish iatrogenic from sporadic CJD as well as discussion about some new hopeful compounds on the horizon. We also heard an update on the Creekstone Farms case and the current political challenges we are facing.

Our scientific presentations this year offered great hope. After the conference I received an email from one scientist stating that he had been very moved by meeting our families, he promised to work faster in his search for treatment options.

The schedule is still on our website in case you want to review the speakers and topics.

On Sunday we heard a moving presentation from Don Simms, father of Jonathan, the world's longest surviving CJD patient. The Simms family has offered to supply Jonathon's tissue to many of the world's top researchers for study. This generous offer was made to hopefully accelerate the search for answers.

We also heard about the work of support organizations from all over the globe and participated in an outstanding advocacy training session. This advocacy session prepared us for the Capitol Hill visits made by many of our families on Monday, July 9. These visits were made to help educate legislators about CJD and the issues we are concerned about.

If you attended the conference and haven't already done so, please return your evaluation forms, both for the meeting and for any Capitol Hill visits you made. We greatly depend on your input.

We're moving forward with many important projects. Our last two DVD's, one discussing patient care and infection control and one for funeral directors and embalmers are finished. They are being presently duplicated and we should have them within the next two weeks.

There are two golf tournaments coming up, both on Monday, August 13, The Aaron Kranitz Memorial Golf Tournament will talk place at Firestone Country Club, Akron, Ohio and the Jerry Yaffa Memorial Golf Tournament at Woodcrest Country Club in Cherry Hill, New Jersey. If you are interested in participating in or contributing to either tournament please call us or check our website for details.

Our political advocacy work is moving ahead and I'll be writing my report on this work in the next few weeks.

I want to thank everyone who came to the Fifth Annual CJD Foundation Family Conference, without a doubt each of you were appreciated and vital to this venue.

Please let me know if you have any questions, concerns or suggestions.

My best regards,
Florence



Florence Kranitz
CJD Foundation
286 N Cleveland-Massillon Road
Suite N
Akron, Ohio 44333
330-665-5590

May Newsletter by wanda
May 30, 2007 03:03 PM

May 23, 2007

Dear Friends,

I want to fill you in on a most troubling situation involving the USDA.  I'm sure you are all aware that Japan and South Korea stopped importing U.S. beef after the discovery of our first case of BSE was announced in 2003.

The USDA quickly assured us that our beef was being carefully monitored for this fatal brain wasting disease and the U.S. beef was among the safest in the world.  The unfortunate truth is that the USDA tests so few cows it would be impossible for anyone to know how prevalent U.S. BSE really is.  Cattle testing was increased from 40,000 per year to 375,000 for an 18 month period following the discovery - there are 35 million cattle slaughtered for the U.S. food supply each year.  The increased testing was partially fueled by the government's attempts to satisfy our trading partners.

A small group consisting of a representative from the Consumer Federation of America, the Center for Science in the Public Interest, Dr. Pierluigi Gambetti, Ruthie George and I met with Secretary of Agriculture Mike Johanns last July to ask that the increased number of BSE testing not be cut back but instead that it be increased.  One week after our visit Mr. Johanns announced a USDA cut back to the previous 40,000.

The USDA lobbied long and hard to get the borders reopened to Japan and South Korea among others.  These two countries represent billions of dollars of revenue to the cattle industry (Japan, the largest overseas market for U.S. beef accounted for $1.4 billion in revenues in 2003 before the doors slammed shut and South Korea the third largest market imported $813.2 million the same year).

In a letter to me dated October 3, 2006 Mr. Johanns stated.... "With regard to USDA's activities, it is important to understand ...USDA's BSE surveillance is being conducted not as a food safety measure but rather as a monitoring effort designed to evaluate the effectiveness of the United States' BSE safeguarding measures with respect to animal health".

I've tried to understand this statement and the philosophy it represents, but find it difficult to understand how human risk from infected meat takes a back seat to what appears to be a policy benefiting specific special interest groups.

In fact, here is a segment of the USDA's mission statement clearly contradicting Mr. Johanns' words...

USDA has created a strategic plan to implement it's vision.
The framework of this plan depends on these key activities:
expanding markets for agricultural products and support
international economic development, further developing
alternative markets for agricultural products and activities,
providing financing needed to help expand job opportunities
and improve housing, utilities and infrastructure in rural
America, enhancing food safety by taking steps to reduce the
prevalence of foodborn hazards from farm to table,
improving nutrition and health by providing food assistance
and nutrition education and promotion, and managing and
protecting America's public and private lands working
cooperatively with other levels of government and the private
sector.

A statement released yesterday reported that Japan and South Korea will soon be opening their borders to our cattle again based on the U.S. upgraded rating from the OIE (World Organization for Animal Health) from "possible risk" to "controlled risk".  The USDA's Chief Veterinary Office Dr. Ron DeHaven serves as the U.S. official delegate to the OIE.  Through the OIE decision the USDA is now able to avoid accountability at all costs, even those directly related to human lives.

It is important for us to be aware of government decisions that directly affect our lives as citizens, especially for those of us who know the horrors of a disease in which one form can be contracted through ingesting BSE contaminated beef.  Please consider contacting your Senators and/or Congressional Representatives now to discuss your concerns.  In July, as part of our family conference, as a group we will be visiting our Representatives on Capitol Hill to discuss this issue.  We hope you will help us voice our concerns.

Please join us for the fifth annual CJD Foundation Family Conference, July 6-8 in Washington, D.C. and also join our advocacy visits to the Hill on July 9.  Check our website for the schedule and other information about this event.  www.cjdfoundation.org

Call or email me with your questions or comments.

My best to you all,

Florence
florence@cjdfoundation.org

April Newsletter by linda
April 10, 2007 05:07 PM

Dear Friends,

Today we completed our mailing for the CJD Foundation Family Conference.  The letter, tentative schedule and registration form should reach you by the end of this week.  Our list of speakers is most impressive; we hope you will join us in Washington, D.C. in July.  If you don’t receive your letter by next week please call us or check our website for information.

In my last newsletter I reported that the USDA was scheduled to close the BSE testing plant in Pullman Washington.  The announcement was made a week before the plant was scheduled to close.

I want to thank those of you who contacted your Congressmen/women and Senators to express your concerns and displeasure.  We took action by discussing this issue with the FDA and many of our contacts on Capitol Hill, we sent emails to representatives serving on the Agriculture, Food Safety or Appropriations committees, and contacted our friends at other consumer representative organizations.

Yesterday I received the news that the FDA (which has oversight regarding U.S. food safety) acted to assure that the USDA will keep the BSE testing lab open for six more months.  “The USDA has expended the contract through September 30, with the option for further extension”.  Don’t ever discount the importance of advocacy, together we ARE making a difference!

Carole Laderman, our volunteer Development Co-coordinator, has compiled a list of possible funding sources listed below. If you have any contacts within these companies or any other suggestions please let me know.  We would greatly appreciate your help. 

    Broad Medical Research Program (BRMRP)
    BD
  Sartorius
  Clinton Global Initiative
  Toson
  Medtronic
  GE Healthcare Foundation
  Howard Hughes Medical Foundation 

In early May, Ruthie, Carole and I will be attending the Bio Conference in Boston to continue our search for possible funding partners.

Our HelpLine call numbers have increased markedly this year.  As of April 6 we have had reports of 118 new suspected or confirmed cases of prion disease in 2007.  Last year at this same time we had received 74 new case reports.  This increase could be attributed to our medical education outreach program, our new website (which offers better information) or (hopefully not) an increase in the number of U.S. cases.  We are carefully monitoring this situation. 

I always enjoy your feedback and look forward to hearing your comments.  You can email me at Florence@cjdfoundation.org.

Warmest regards,
Florence

February Newsletter by linda
January 02, 2007 02:39 PM

February 25, 2007

Dear Friends:

I have just returned from a very interesting meeting in Calgary, Alberta, Canada.  It was the first international meeting of the one-year old  PrioNet Canada organization.  The meeting was planned by Dr. Neil Cashman, Director of the PrioNet.

PrioNet Canada is funded by the Canadian government and has been set up to address all possible areas affected by the discovery of endemic Canadian BSE in 2003.  A $35M grant has allowed Dr. Cashman and his group to set up a network of collaborations including CJD science and possible early detection tests and treatments, the affects of BSE on farmers including socio-economic and psychological, Chronic Wasting Disease, as well as concerned government representatives.

Some of the speakers and attendees are good friends of the CJD Foundation and have been presenters at some of our conferences including Dr. Robert Will, Dr. Jiri Safar, Dr. Robert Rohrer, Dr. Pierluigi Gambetti and Dr. Neil Cashman.

One of the very impressive elements of the meeting was the inclusion of a large group of young research students and research assistants.  Many of them were there to present their work, most of which was far reaching in scope.

I was honored to have been asked to present the welcome plenary address on Sunday night.  This meant that the patients and families, on whose behalf the attendees were working, were acknowledged.  The title of my talk was “The Human Side of CJD, Making a Difference Together”.  I focused on trying to make all of us real and relevant to the audience.

I was not only impressed but also a little jealous of this small country that seems to have learned from the tragedies of the past and is determined not to let history repeat itself within their borders.  How ironic was it that I came back to work on Thursday morning only to read an article from the Seattle Times, Feb. 22, reporting that the USDA is planning to close their BSE testing lab in Pullman, Washington on March 1.  “Despite increasing concerns”, the article goes on to state, the USDA “has scaled back mad cow testing by more than 90 percent and backed off plans for a mandatory animal tracking system” because testing and tracking are too costly given the rarity of the disease”.

How does the USDA know that BSE is so rare when in July they scaled back testing from 750,000 head of cattle destined for the U.S. food chain to 40,000? The real issues seem to be ignored. Issues such as: 

Sick or “downer” cattle are often buried on the farm because there is no incentive for farmers to have these animals tested for BSE.
Downer cows are often overlooked due to overcrowded conditions in slaughter facilities.
Too many special interest groups are exerting pressure.
To name only a few

Just as a reminder, a small group of us met with Mike Johanns, Secretary of Agriculture in July, 2006.  He indicated that there wasn’t much concern about BSE on the part of the USDA. We asked him to please continue BSE testing at the 750,000 level, reminding him that 35M head of cattle were slaughtered for food in the U.S. each year.  Less than a week after our visit he announced the testing cutback to 40,000.  The math defies imagination!

I am now asking you to help make this an issue.  Please call or write your Congressmen/women and Senators and express your concerns and displeasure at the closing of a BSE testing lab (there are three more slated for closure soon).  We have just elected a more independent Congress - ask them for help.  Tell them that you voted them in office to work on your behalf not on the behalf of special interest groups.  I feel very strongly that unless we speak out now our children and grandchildren may be the beneficiaries not only of failed policies causing unsafe meat but also of the possible tragic fallout of endemic cases of vCJD.

On another topic, we are moving the CJD Foundation office this Wednesday, February 28.  We are only going down the street but are gaining more space for basically the same rent.  Our phone numbers will remain the same.  We hope there won’t be any lapse in phone service but just in case we have made arrangements for the calls to be diverted to another number for a few days.

Please look at the left hand index on our website homepage, www.cjdfoundation.org for information about “Captain Bills Cycle Squad Ride for CJD”.  This exciting biking fundraiser is being planned by Nick and Abby Webb in memory of Abby’s father, Bill Davis, who died of CJD in 2006.  It will take place on June 2, 2007 and offers a wonderful opportunity to ride around beautiful Lake Tahoe and to raise money to help us continue our work. Contact information is listed on the page.

We will be sending out conference information soon.  Please plan to join us for our fifth Annual CJD Foundation Family Conference July 6-8 in Washington D.C.  We will begin with an informal reception on the evening of July 6th, and continue on Saturday and Sunday July 7th  and 8th with presentations by leading researchers who will tell us about their exciting work as well as reports from representatives of families and support organizations around the world.  On Monday, July 9th, we conduct our lobbying day to visit Capitol Hill and talk about our concerns to our individual representatives.

I send you all my warmest regards and hope to see you in Washington in July.

Sincerely,

Florence

P.S. Please feel free to call or email me with your comments or questions,
(330) 665-5590, Florence@cjdfoundation.org.

December Newsletter by linda
December 11, 2006 03:24 PM

Dear Friends,

WELCOME TO OUR BRAND NEW WEBSITE!!!  WWW.CJDFOUNDATION.ORG.  This site was donated to the CJD Foundation by Rhett Daniel of Daniel IT in loving memory of his father Terry Daniel.  We are deeply grateful to Rhett and his team for their dedication, generosity and patience!

On Friday, December 13 I attended an FDA meeting where the topic was blood safety.  If there were ever any doubts about the seriousness of this issues or the extent of concern for our safety on the part of the FDA this should help alleviate them.  Blood safety and prion risks have been the topic of every FDA meeting for the past three years.  The scientists and various affected agencies and companies making formal presentation will once again highlight every facet of blood safety issues known today.

The CJD Foundation has been diligently ;oolong for funding sources.   Carole Laderman, our outstanding political advocacy chairman, has taken on the role of development.  She is investigating possible funding partners.  If you have any connections or suggestions for her please let us know.

Our Annual Fund drive is bringing in much needed donation.  In January I will be able to give you a report on the total amount raised.  We thank those of you who have replied so generously to out Annual Fund letter which i turn allows us to reach out in so many ways.  I hope those of you who have not yet donated will respond soon.

Thus far we have used discretionary funds to help one family pay for short term medical expenses and we are hoping to continue to be able to offer limited "no strings attached" help to families in need.

In February I will be traveling to Alberta Canada (brrr) to speak at the PrioNet meeting.  I was invited to this Canadian scientific conference to present the same type of speeech I gave in Turin.  It is an honor to be able to talk about families and the work the work of the CJD Foundation and the new CJD Internation Support Alliance.

Plans are already underway for our next CJD Foundation Family Conference to be held July 6-8 with Politcal Advocacy Day July 9.  Please mark your calendars and join us again in Washington D.C. for this outstanding event.

I want to take a mement to wish each of you a very healing and peaceful holiday season and New Year.  Those wishes are echoed by Ruthie, Linda and Wanda and our entire Board of Directors.

My very best to each of you.

Florence

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