CJD Talk

If You Are Going To The CJD Family Conference

noreply@blogger.com (Heather Larson) — Fri, 15 Jun 2007 21:52:00 +0000

If you are going to the CJD Family Conference and interested in helping me get info about it back to the masses, please e-mail me. (Hotwords AT mac dot com).

I'm looking for people to interview about their experience at the family conference, what you learned there, who you met, etc. You can be my correspondent and I'll be making a podcast out of all the audio...if I get some participation. So if you are interested, let me know. I can't make it to the conference this year, but I would still like to support it and be there "in spirit."

I am definitely NOT attending the conference next month

noreply@blogger.com (Heather Larson) — Sun, 10 Jun 2007 06:17:00 +0000

The Bad News:

It's going to be too much of a financial burden to attend the conference next month for me, especially with Boston University's expensive tuition due. (More on that in another blog, but it's impossible to get much finaid in my program so it's all out of pocket). I seemingly can't stray far from the chiropractor these days either, which is also another story which some of you may know.

The Good News:

I don't really feel I have to attend the conference in order to make a difference. Though I'd really love to meet everyone in person, especially more E200K people, and fCJD families in general. I'm going to continue doing my thing from Phoenix for this year...and will again try for next year's family conference.

My New Project Is Beginning

noreply@blogger.com (Heather Larson) — Sun, 27 May 2007 04:09:00 +0000

I'm starting a new website and a new blog dedicated to one very tailored subject -- finding the cure for CJD. Read and comment on the new blog.

I elude on the new blog to the fact that I have purchased the domain CURECJD.com. More to come on that later... Right now, I'll start with the blog. The plan right now is to post links to new info on who is finding the cure for CJD.

If you've read CJD Talk for a while, you know I come from a long line of genetic cases. How long, I am not sure. Since this is the Internet, I'm going to post some info right now I just hope someone will eventually find by Google search someday. I have tried to look online for relatives of Walter Zadzielka before and have come up empty. I did find a Vicki Lovett had posted something online somewhere years ago trying to find autopsy info on Walter Zadzielka...or is it Zadzeilka, or is it Zadel? I e-mailed her but the address no longer worked. Ms. Lovett, I have no info on Walter's autopsy. But he was my mother's uncle.

My mother came from a long line of Polish Catholics. Her family was huge and from Ohio. My mother used to tell me she had 100 cousins. There's a huge potential for many more genetic cases of CJD right there.

So if you happen upon this blog and you are related to anyone whose last name is Zadel, you may be a relative. If you are, the genetic mutation is E200K. That is the only autopsy info you would have gotten off of any Zadel autopsy. Feel free to get in touch with me, or you don't have to. It's personal; I understand.

CJD is a death sentence, but it shouldn't be. So since my deal in life is genetics I honestly don't care too much about the beef/vCJD side of things. It's horrible, yes. I'm not taking anything away from that. But I feel like I need to get a move on here if I want to see my own grandchildren someday. My mother died at age 56 and I'm 27 now, hence my extreme interest in focusing on the cure.

At the moment, the cure seems to be exploring something like PPS. It is no cure today in my opinion, but it's all we've got. There are other things being researched, and I'd like to make sure people know about those items too.

So now you know that finding the CURE for CJD is my interest and you also know why. Am I a carrier? I don't know. I won't get tested. Whether I carry it or not, the cure is still important to me. The cure is the only answer whether beef is in the equation or not. CJD is in the blood supply. It's not going away. And what if there is another wave? What if we can cure the animals first? What if we can only cure one mutation of CJD at first?

This is what the new blog will be about. Feedback welcome.

Mother's Day Sucks.

noreply@blogger.com (Heather Larson) — Mon, 14 May 2007 00:02:00 +0000

It's Mother's Day and I wish you a happy one, but let's face the truth here -- this is not a happy day for a lot of us who have lost a mother to CJD. I try to make the best of it by focusing on the living, especially because I have a wonderful stepmother and her mother is a wonderful grandmother to me. But we also have to remember the dead.

My mother's name was Phyllis Larson. She was a Led Zeppelin fan. My mother liked rock n' roll. I never did figure out if she was a democrat or a republican and maybe she didn't know either. I do suppose she was republican, but I'll never know for sure. One thing was for sure; my mother was cosmopolitan. She was not a woman that enjoyed anything less than room service. No camping for her. She liked shopping and her favorite place was Stanford Shopping Center. She was a Raider fan. I think she'd be happy with this year's first-round draft pick. She went to a Suns playoff game with me a few years ago when they played the Spurs. History is repeating with the Suns right now, in case you don't follow sports. I think mom would have enjoyed the Spots 620 KTAR nose bandaids everyone wore at the game the other day. Two of her favorite stores were Sephora and Ulta. She liked comfortable shoes. She liked Anderson Cooper on CNN and "Everybody Loves Raymond." Her vice was chocolate. She'd be happy to know I'll be in Mexico this year on the anniversary of her death, having fun with my new family. She'd be absolutely fascinated with you all and to know all about the disease that killed her. Thank you for visiting my blog about CJD. Please leave a comment to tell me about your mother when you get a chance. Thank you.

--Heather Larson

Will I Make The CJD Family Conference?

noreply@blogger.com (Heather Larson) — Sun, 13 May 2007 23:52:00 +0000

This one is still up in the air. There are a few question marks circling my head right now and as soon as they are answered, I will know if I am able to make the CJD Family Conference in July. It's just a month and a half away!

Get More Info on the CJD Family Conference

I am desensitized to this madness.

noreply@blogger.com (Heather Larson) — Sun, 15 Apr 2007 06:37:00 +0000

I guess I no longer realize what a horrific disease CJD is. I'm a couple years removed from the experience and I've definitely moved on with my life. I do what I can for the cause of finding a cure whenever I have some free time, I blog, I speak, I help journalists, but I don't have time to do the kinds of things I'd like to do.

Tonight I was reminded how terrifying this disease is and how little the "normal people" know about it. I say "normal" meaning those who have yet to hear of CJD. A coworker and I were swapping stories about losing our parents. I was telling my buddy about identifying my mother's body post-autopsy after it was returned from New Mexico -- the nearest place where I could find someone to do her autopsy. We live in Phoenix. I told him how her body bag was marked "biohazard" in big black Sharpie pen letters. It blew his mind. I forgot this impact these stories have. They really need to be told more often to anyone who wants to listen.

Ouch. Over A Month Since My Last Post.

noreply@blogger.com (Heather Larson) — Fri, 13 Apr 2007 02:15:00 +0000

Ok, I do have big ideas for the blog backing up until I get some free time. That will likely get worked on during my Boston University summer break, which cannot come soon enough! So bear with me, more is to come, I promise.

I got my invite to the CJD Foundation Family Conference in July. I swear, this year I have to make it out there. Even if I'm in school because that's the meaning of attending college online.

I almost have a better excuse for not posting -- my weekend car accident. I was very lucky; after blowing out a tire going 65 mph on the 101 in the fast lane, I ended up with mere scratches. I'm also keeping my chiropractor's office and insurance company quite busy, not to mention anyone I know with a connection to cars I may want to think about purchasing. The car, a 1999 Ford Mustang, is a total loss.

Watch this spot for more news on my future car. More importantly, watch for more info about CJD soon!

What Would I Do with a Book About CJD?

noreply@blogger.com (Heather Larson) — Mon, 12 Mar 2007 04:39:00 +0000

Not that I have time to write a book about CJD if I don't even have time to make blog posts; Boston University keeps me busy. It's the kind of busy that made me want to lay by the pool a whole lot last week instead of keeping up my usual frenetic pace of working, schooling, and blogging. So I'm back now (and soon school will be as well) with a question: what on Earth would I do with a book about CJD?

Though it would make a good topic, how many people would really read a book about CJD? How on earth could this ever be marketed to anyone? Who would read this? What book publisher would take a risk on publishing something that only a small niche would be interested in reading? These are the questions I ask myself each day before tossing around the idea of just writing the book and then giving it a Creative Commons license.

Are there stories that need to be told? Absolutely. But how do I tell them? Which is the best way? That's what I've been thinking of this past week. Who wants to read a book on CJD? Could there be a more depressing book?

CJD Talk reaches 100 posts!

noreply@blogger.com (Heather Larson) — Wed, 28 Feb 2007 22:07:00 +0000

Hey! That last post I made today was my 100th post! Not too shabby. Thanks to the small audience I have for checking in with the blog! My hope is to use the blog to unite CJD families all over the world for networking purposes. I also want everyone affected by CJD who stops here to leave a comment -- leave a short comment or a long one, tell your story, or memorialize your loved one.

If you have a website or a blog, please let me know so I can post a link to it here. If you have a "CURE CJD" license plate, please take a photo and send it to me so I can post it. And same thing goes for is you have a sticker, t-shirt, magnet, or bracelet for sale to raise money. Anything you're up to in the fight to cure this disease is something I want to blog about.

It is my goal to use this blog to show how many people CJD affects and how. I can't do that without your help!

For example, if mad cow disease hits the news again, if a cow tests positive for BSE in America again, then people will be online searching for terms like "CJD," "mad cow disease," "TSE," and "BSE" just to name a few. If people happen to come across this blog in a search, I want them to see how many people care about CJD.

So please, keep in touch. You may e-mail me at: heatlarson AT yahoo DOT com, or you can leave a comment.

Thought for the Day:

noreply@blogger.com (Heather Larson) — Wed, 28 Feb 2007 13:28:00 +0000

If a tree falls in the forest does it not make a sound? Just because no one is there to hear it, doesn't mean the sound does not exist, right?

Just because CJD hasn't happened to someone you know yet doesn't mean it won't. Just because we test a few cattle a year for BSE without positive results doesn't mean the millions not tested don't have it. Just because we don't know about how to cure CJD yet doens't mean the cure doesn't exist. Just because we can't see CJD in the blood supply doesn't mean it isn't filling bag of blood waiting to be transfused into needy patients.

Prediction: CJD Talk likely on hiatus this week

noreply@blogger.com (Heather Larson) — Tue, 27 Feb 2007 21:41:00 +0000

It's a rough week for me to do updates on CJD Talk, so I'm apologizing in advance. We got a good comment volley going last week about Pentosan Polysulphate, or PPS, and I want to keep it going!

But this week I'm hard at work on my research paper for my class at Boston University and the boyfriend is home from an extended business trip for the week leaving me very little free time to blog. CJD Talk will get much more interesting next week when he's again out of town and I have a week off from school!

Feel free to hit the comments below to keep the blog alive for a few days.

CJD Foundation Newsletter 2/25/07

noreply@blogger.com (Heather Larson) — Mon, 26 Feb 2007 15:34:00 +0000

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 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, 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 advocacy 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

Hope from Pentosan Polysulphate, or PPS

noreply@blogger.com (Heather Larson) — Fri, 23 Feb 2007 15:33:00 +0000

Martin Luther King once said all that's done in the world is done by hope and that is certainly the case with Pentosan Polysulphate, or PPS. Take for instance the story of Don Simms, a father who wouldn't take "no" for an answer when his teen son fell ill with CJD in the UK. Don fought to make sure Jonathan could receive PPS years ago and Jonathan is still alive today.

All kinds of conflicting research exists today about PPS. Does it work or doesn't it? And Jonathan Simms may be alive, but what is his quality of life? That's a heavily guarded secret to this day, one where very little information makes it to the public and that likely only happens at the yearly CJD Family Conference in DC.

I know if I started showing CJD symptoms today, I would want to receive PPS. I'm young enough that I want a chance. If noting else, it would at least keep me alive until the cure comes; at least that is one of the fantasies I have.

The CJD Foundation is pushing for PPS trails here in the U.S. and I have to agree it's the best thing we can do.

Check out Nicole's blog

noreply@blogger.com (Heather Larson) — Wed, 21 Feb 2007 16:54:00 +0000

One of the reasons I started CJD Talk was to show whoever might stop by here just how many of us there really are who have had to deal with CJD in their lives. The goal has always been and will always be to get as many people involved with the cause as possible and to get us all communicating with each other. It's that whole "strength in numbers" theory.

I must live to see the day when this isn't treated as a "rare disease" or an "old person's disease." Because it's not.

So check out Nicole's blog. She just joined my MySpace CJD Support Group and blogs about some nutrition issues as you can see. But she also blogs about the Stop the Madness Petition, milk from infected cows, and the idea of a possible epidemmic.

So give her a read!

CJD For Dummies

noreply@blogger.com (Heather Larson) — Wed, 21 Feb 2007 16:50:00 +0000

In interest of starting at the very beginning, I am doing a "CJD for Dummies" or "CJD For Newbies" series here on the blog, CJD Talk. If you have been affected by CJD or are curious and just want to learn more, be my guest.

Also, if you have any questions about CJD, please ask and I'll find the answer for you.

And if you have any friends in the medical profession, please pass the blog onto them as we CJD families are pushing for more disease awareness and better patient care.

Please take the poll:

Thank you!

Who is at risk for CJD? Have you ever had a surgery or received a blood transfusion? Have you ever eaten wild game such as deer or elk?

Learn more at:
CJD Foundation

Arizona Game and Fish*Remember CWD has been found in other states, such as Colorado (since 1967).

What are those jerky muscle movements called?

noreply@blogger.com (Heather Larson) — Wed, 21 Feb 2007 16:27:00 +0000

Today's lesson in CJD is about jerky muscle movements, or myoclonus. (Pronounce that my-oh-clone-us). This was also one of my mother's CJD symptoms and I remember exactly the moment I first saw it. Prior to the major onset of her symptoms, she was very tired and would be napping by 2 or 3 p.m. each day. (She worked from home and did get up at 4:30 a.m. when my dad got ready to go to work, but the early wake up time had never bothered her before then).

My mom was sleeping in my dad's recliner and I could see her left leg moving. It was twitching and it kind of had a little bit of a bounce to it but the movements were very tiny. I thought my mother was dreaming she was running or something to that effect. What I saw was myoclonus.

Do you know how your body gets that last little jump right before falling asleep? That has scared the hell out of me for the last two years because it always makes me afraid I am having the beginnings of CJD myself -- a totally natural fear since my mom's CJD was familial.

But guess what? That's perfectly normal and everybody does it. That's according the NINDS, which has some pretty helpful information about myoclonus.

What is cerebellar ataxia?

noreply@blogger.com (Heather Larson) — Tue, 20 Feb 2007 18:28:00 +0000

Today I'm going to share one of the CJD symptoms my mother had that I will never forget: cerebellar ataxia.

According the the Medline Plus Encyclopedia, "acute cerebellar ataxia is sudden onset of uncoordinated muscle movement."

For my mom, this meant she couldn't control her balance and gait. Her legs shook and she was very unsteady to say the least. She never fell though, I have to say. My mother complained of dizziness and vertigo and even carried around a plastic bag because she was nauseous. When she walked, her leg would jerk out in any direction imaginable. It was very hard for her to control herself as she walked.

That was October 8, 2004, the day we took her to the emergency room. She died November 10, 2004.

More on CJD from Medline Plus.

More about CJD from NORD.

New for CJD Talk

noreply@blogger.com (Heather Larson) — Mon, 19 Feb 2007 16:33:00 +0000

I'm going to be working on sort of a "CJD for Newbies" series for this blog. I was remembering when my mom first got sick and I was looking online for anything her symptoms fit. I'd Google all her symptoms and I kept coming up with some thing called "CJD." At the time, however, I failed to realize it was a fatal disease. Once my mother was diagnosed with CJD and I began to learn about it, I discovered there was a lot to learn.

Today's tip is especially great if you've just stumbled upon this blog trying to find some information about CJD. If you don't know where to begin, let me be the first to tell you about the CJD Foundation if no one else has done so.

The first thing you can do is request information and support by calling the Foundation at 1-800-659-1991.

The Foundation also puts out an informational pamplet to help you handle your changing role as a caregiver.

In interest of beginning at the very beginning, you should download the Factsheet PDF about CJD so you can learn the very basics like what it is, what types of CJD there are, and whether this is "mad cow disease" or not. That last part is the cause of much strife, so it's good to put the myths quickly to rest!

What CJD issues are important to you?

noreply@blogger.com (Heather Larson) — Thu, 08 Feb 2007 01:52:00 +0000

Just so I know that I'm serving this blog's audience, I'd like to do a bit of research here into what you want. What would you like to hear more about? Feel free to comment or e-mail me at length. I've made a little poll below for you to take. Thanks in advance for your time!

CJDTalk becomes B.U. widow

noreply@blogger.com (Heather Larson) — Thu, 08 Feb 2007 01:47:00 +0000

I apologize for the infrequency of posts since Jan. 24. This blog has taken a backseat to my working on my undergrad degree in liberal arts at Boston University. (EUDCP online - that's the executive undergrad degree completion program). I haven't had much time to pursue topics to write about in regards to CJD. That's definitely not my intention, but please bear with me as I learn to balance my studies with the blog. And on that note, let's wish the blog a happy first birthday! It was born in January '06.

More CJD legal news

noreply@blogger.com (Heather Larson) — Wed, 24 Jan 2007 13:16:00 +0000

This is a nice example of things going right. CJD needs to be reportable in every state so that we can accurately track the disease. Since CJD isn’t yet reportable in all 50 states here in America, we cannot accurately tell anyone how many people are really dying of this disease. As the article also points out, sometimes doctors aren’t well trained and miss it. They misdiagnose CJD as something else. I have noticed this is especially true in smaller cities – not so here in Phoenix where we are lucky enough to have Barrow Neurological Institute.

The link again: WTHR, Indiana

And a link to Indiana Representative David Orentlicher: Send him a note to say thanks and give encouragement.

Here's something you don't see everyday

noreply@blogger.com (Heather Larson) — Fri, 19 Jan 2007 17:40:00 +0000

Aside from the snow in Malibu and the rain in Phoenix, a widow in the UK is suing the government because her husband died of CJD after undergoing a government-sponsored treatment with growth hormone. Children with growth hormone deficiency were targeted for treatment in the national program between 1979 and 1985 with growth hormone extracted from corpses.

You don't see this type of thing every day; seldom is a family able to find a reason to sue their government in a case of CJD. It's pretty rare when you're able to pinpoint how one acquired the disease and even more rare that it would be the government's fault. I don't know about you, but I'd rather be four feet tall and live a long life than be "normal" and die of CJD. The question is, should the UK government have known better back in the late 70s and early 80s?

Read the article in Sheffield Today.

The realities of vCJD infection via blood transfusion

noreply@blogger.com (Heather Larson) — Thu, 18 Jan 2007 22:46:00 +0000

This was just posted in the comments section of my last post, but it's good enough to be center stage in its own post. A new, and fourth, case of vCJD via blood transfusion has been diagnosed in the UK.

Here is the link to the artcle on the Health Protection Agency website.

Makes you wonder a lot of things! It also makes you feel horrible for those other 23 people who received blood transfusions infected with vCJD. Will they get sick? When? Are these first four patients to contract vCJD from blood transfusions M/M? Are they the first wave of what will be many more?

Could two more waves of vCJD be coming?

noreply@blogger.com (Heather Larson) — Sun, 14 Jan 2007 16:48:00 +0000

This article in The Guardian talks about how there could be two more possible waves of vCJD to come in the future. It’s a good article, pretty long, but worth reading because it’s filled with stats and facts.

I’ve been wondering about titer lately, as in how much of the infectious agent can make you sick. If I eat one infected steak, is that enough? Or must I eat infected steak a few times a week every week for years in order to get infected with BSE and thus come down with vCJD? Nobody really knows that answer to that as far as I can tell.

(My example is purely hypothetical, as I don’t eat steak and my family carries the E200K mutation. It doesn’t matter what I eat at this point, it just matters whether I carry the marker – again, as far as we know to date. I wish there were research done specifically on this).

If I get one pint of blood in a transfusion that is infected with vCJD, is that enough to infect me? Apparently, yes, according to this article. And that is just the point of this article. Who cares about steak and cattle anymore when an indeterminable amount of human beings are carrying the infectious agent and unknowingly giving blood?

It is a huge problem.

That brings me to my next point. There are two possible answers to the problem of the second wave:

1. Come up with a blood test for vCJD.
2. Cure CJD!

The blood test for vCJD would be a great advancement for blood donation. But I feel the only real answer is to just cure the damn disease. End of story. A cure for CJD would end all these issues. It would also save my life (if I carry the marker) and the lives of others like my relatives who carry the E200K mutation or any other mutation. This disease isn’t just about cattle; some of us don’t need beef to get sick. We’re the ones who will need the cure someday regardless of whatever political policy changes do or don’t get made.

Read the article here. One more item of food for thought, taken from the article:

"The fear of some researchers now is that, 20 years on, interest in answering the crucial remaining questions will wane. But leaving them unanswered would be a desperate mistake, says Professor Bird. "If that happens, we won't have all the information, and that's extremely dangerous.""

Familial CJD Support Group tonight, 8-9:30 pm EDT

noreply@blogger.com (Heather Larson) — Fri, 12 Jan 2007 00:04:00 +0000

Please join Deana Simpson TONIGHT for the Familial CJD online support group.

Deana will guide the discussion as well as answer your questions.

As you will see when you go to the website, the CJD Foundation has a new look. To access the Support Group click on Family Support and then in the 2nd line there is a link to the Chat Room. When the next page comes up, give it a few seconds for the actual chat room to come on the screen.

You will enter the room with a Guest number. To change that to your name, just click in the little box that has Guest in it and another small window will open asking for your screen nickname.

The group runs from 8:00 p.m. to 9:30 p.m. EDT.