Florida's "CURE CJD" license plate!

This one belongs to Robin in Florida, who lost her mother to CJD.

If you have a license plate with any variation of "CURE CJD" take a photo and send it to me at: heatlarson AT yahoo DOT com.

Let us not forget.

On this Christmas Eve, let us not forget the ones that we've lost. For me, that is my mother, Phyllis Larson, who died of the fCJD mutation (E200K) at the age 0f 56 right before Thanksgiving 2004. I look at her photo today that I keep in my living room and cannot help but think one thought: there is no reason why she should have died. There is no reason why any of our loved ones should have died.

We must keep doing whatever we can to get the word out about CJD and to find the cure. It is a senseless disease and it is completely senseless that a cure eludes us still. The fact that people are still dying of this disease is atrocious. We must work together to increase understanding of this disease. I know if we families stay dedicated to the cause, we will find a cure. And it will be because of us and the tireless work we all do.

Our constant activism is proof that after you have witnessed the horrors of CJD, you cannot forget. You can try to act like you do, but we all know better. Sometimes, I feel I have to not think about it so that I can lead a normal life. That is sort of why the blog has been on the backburner the past few months. But in 2007, I promise you will see a renewed passion from me in regards to fighting this disease.

My father did not want to talk much about CJD after my mother died while I, on the other hand, was continually fascinated by my mother's killer. I have always been intrigued by the fact that there is a 50/50 chance it can kill me too. Obviously, my father is much less intrigued by this. He and I went out to dinner on the eve of the two-year anniversary of my mother's death this year and for once he couldn't stop talking about CJD! He's even going with me on the 5th when I go to Barrow Neurological Institute to represent the CJD Foundation.

In 2007, I hope to see you all at the family conference in DC. I will make it to DC this year! I promise! The conference is only getting bigger and better every year with so many great people from all over the world attending. I'd be heartbroken if I missed it again. Maybe I can even bring my dad.

I've been kicking around ideas for a book for the last couple years. Many of you know I'm a freelance writer, so it should come as no surprise to you that I'll be using 2007 to research said book. I'll have to start by organizing all the research I've been accumulating for the past two years...I dread the task, believe me! But I wouldn't be doing it if it weren't important.

So let us not forget the ones we've lost as we (try to) enjoy the holidays. And let us not forget the families right now who are helplessly watching a loved one battle this disease. Remember that each of us has the potential to fight this disease in our own ways. Together, we make an unstoppable team. I wish us all hope as we enter 2007. I hope this is the year we will find the breakthrough. I hope this is the year we can get our politicians to listen to us about the dangers of BSE. And I hope in this new year that we can continue to heal.

Merry Christmas from me!

For once, a breather from CJD issues to wish you and yours a very Merry Christmas and a Happy New Year. Happy Hanukah too!


anotherheather

South Korea rejects beef from Iowa, breaks trade rules

Senator Harkin is getting involved with South Korea's recent refusal of a shipment of beef from Iowa. Here's the story from the Harkin Ag newsletter for December 2006:

Harkin Calls on South Korea to Follow Fair Rules for Beef Trade

In a December 19 letter, Senator Harkin wrote to South Korean Ambassador Lee Tae Sik urging his government to establish clear, transparent, and fair rules regarding beef trade. Earlier this month, South Korea rejected a beef shipment from a Des Moines meat packer, Iowa Pacific Processors, Inc., claiming that periosteum, a connective tissue surrounding bone, was detected in some of the packages inspected, along with thinly sliced bone. Under international standards, and according to the terms for beef trade agreed to by the United States and South Korea in September, the presence of this connective tissue should have not been a basis for rejection. This is the most recent of three U.S. beef shipments rejected under South Korea's intensive inspections focused on detecting bone fragments in U.S. beef shipments.

"The information we have indicates that South Korea's rejection of these beef shipments was not in keeping with international trade standards," Harkin said. "In order to allow trade between the two countries, South Korea must work in good faith with the United States to set clear and reasonable standards that are fair to U.S. beef producers and exporters."

South Korea maintains that bone of any size poses a higher risk of containing the agent which causes bovine spongiform encephalopathy (BSE), a disease of the nervous system that affects cattle. The United States says that bone is not a BSE risk, and the World Organization for Animal Health has declared that it is safe to trade bone-in beef, even when shipped from a country in which BSE has been found.

The South Korean government claims bone fragments were present in all three rejected U.S. beef shipments, and has used this as a reason to reject them. In his letter, Senator Harkin urged the South Korean government to establish a tolerance for bone fragments in beef shipments, which has been an issue since the U.S. and South Korea agreed to resume beef trade in September.

"The Republic of Korea must establish clear and transparent rules. Boneless beef trade with the rest of the world includes a workable tolerance for bone fragments, and South Korea should comply with these standards," Harkin said. "It is not reasonable to reject an entire shipment based merely on the detection of bone fragments within a handful of packages, nor is it acceptable to reject shipments based on the discovery of connective tissue."

CJD Foundation Newsletter 12.12.06

CJD Foundation Newsletter
December, 2006

Dear Friends,

PLEASE LOG ON 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!

I am attaching the Newsletter from the NeuroPrion 2006 meeting I spoke at in Turin, Italy. I wrote a brief article on page 2. The newsletter will give you an idea of the scope of this exciting meeting.

On Friday, December 15 I will once again be attending an FDA meeting where the topic to be discussed will be blood safety. If there were ever any doubts about the seriousness of this issue 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 presentations will once againhighlight every facet of blood safety issues known today.

The CJD Foundation has been diligently looking for funding sources. Carole Laderman, our outstanding political advocacy chairman, has also 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 donations. 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 our Annual Fund letter which in 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 (brrrr) to speak at the PrioNet meeting. I was invited to this Canadian scientific conference to present the same type of speech I gave in Turin. It is an honor to be able to talk about families and the work of the CJD Foundation and the new CJD International Support Alliance.

Plans are already underway for our next CJD Foundation Family Conference to be held July 6-8 with Political 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 moment to wish each of you a very healing and peaceful holiday season and New Year. These wishes are echoed by Ruthie, Linda and Wanda and our entire Board of Directors.

My very best to each of you,

Florence

Thanks to the watchful eyes of CJD Voice

I have to say, CJD Voice misses nothing because of the great people within. That was the first place I heard about the 3rd case of vCJD here in America and I've been passing it on to a few grateful folks who didn't know about the story yet. I think the unofficial motto of CJD Voice would have to be "always watching, always counting" because it's so true. It just fits. I guess it just comes from that piece of us all that is permanently shell shocked from watching a loved one die of CJD.

vCJD in America: CIDRAP is on the ball as always

Did you read the news about America's 3rd/latest vCJD patient here first? (As in was this the first place you saw it published aside from the CDC website?) CIDRAP is the next to publish the news (that I have noticed anyway). I imagine we all read it in CJD Voice first.

At any rate, CIDRAP is on the ball with the news about the case, which is live on their website right now. Go ahead and read up.

There is a vCJD patient currently dying in Virginia.

This is very sad news indeed and my heart goes out to the patient's family and friends during this difficult time. The disease is suspected to have been contracted while the patient lived in Saudi Arabia. Read the details here.

Good job to the folks in Virgina for keeping it out of the media thus far, because we all know the media doesn't understand this disease, doesn't ask the right questions, doesn't give the public a fair shake and doesn't give enough time or space to stories about CJD. (I say this mostly thinking of broadcast news, which is worthless where BSE and public health are concerned. Print folks, comsider yourselves excluded).

My only hope is that the latest science is available to this family should they choose to use it, whether that's pentosan polysulphate or not. A case of vCJD (or any CJD) in a young person is horrific at best. As we're still fumbling to find our way through this disease, its triggers and someday a possible clinical diagnosis and cure, my only hope is that we use each case as a learning experience. My hope is that something will be learned from this latest case. Because the breakthrough is coming; we can never give up hope.

I say this knowing full well what my own chances are, so yes, that's my E200K biased opinion.