It feels like so much more than just five years have passed.  I think I look older than 30.  I definitely feel older than 30.  Yesterday, my mother would have turned 61.  It was a harder day than I thought it would be.  As each anniversary has passed, I have never been able to anticipate how I’d react.  Perhaps if I’d built something more than just a blog, I’d feel like a better activist, like I’d accomplished something in the face of CJD.  But in the first five years, that was not for me.  This experience five years ago was so bad for me that I’ve only begun to really heal.  When a second death followed in our family last year as my uncle passed, the second blow was dealt.  I never thought another family member would go so soon.  We truly are not blessed with time in this E200K family.

I realize how lucky we are that there is no doubt their deaths were genetic.  We don’t have to live with the guilt other families do thinking it was something they did environmentally or something they ate. We have my mother’s autopsy results; there are no mysteries.  But, on the other hand, we live with the genetic threat.  Having a time bomb ticking in our veins is probably worse than wondering if it was a meal we had in 1986 when the world was pretty ignorant to this…

Each day I wrestle with bizarre thoughts about getting tested, not getting tested, what triggered it in my mother, how I can prevent it in myself…which of us will go next.  I wonder why my mother’s father is still alive at this age.  I wonder why we were so ignorant when we were told his brother had died of “mad cow disease.”  I wonder what year it will be when we solve the prion disease puzzles that baffle us. I wonder if my generation will grow to be old before it hits us, like my grandfather’s generation.  Or will we be like my mother and uncle and go in our 50s?  Will we all be so lucky as to be negative for the marker?  I wonder if something I know or have witnessed in all this is some doctor’s answer to finding the cure.  I wonder if I should adopt instead of having biological children.  I wonder if it’s fair to die and leave children behind; at least I’m 30, so any time after this if I have kids, I would be leaving adult children behind.  These are the things I think about.  This is my life.

I’d be remiss if I didn’t say that there are days when I don’t think about it at all.

CJD is a lens through which I’ve seen life differently.  This has taught me many life lessons that I wanted to or was prepared to learn in my 20s.  I know I have a deeper, more intense focus on life than others do because of it.

So that’s five years.  This is where I’m at.  I’m taking some time to relax as this year ends since I’m off from Boston University right now.  It’s my first real break in a long time.  Usually I have two jobs plus school going at once.  It’s nice to be able to have school off my plate.  I have one final class in January before I graduate.  One of my promises to my mother as she lay dying was that I was going to finish my college degree.  In 2010, with my bachelor’s degree finally complete, I can focus on other things, like doing my part for the cause of curing CJD.  For now, I will just continue to blog and raise awareness.

The story of my mother, of our family, has touched one life at a time.  CJD doesn’t get nearly as much press as the sexier diseases like cancer.  People still associate it with b.s. like it’s an old person’s disease or that it is rare, or that it can’t happen to their family.  People think it’s still something only a few hundred people a year die from, so it’s not that important.  Well, if those 300+ people who died this year aren’t important to you, well, I can’t help what kind of person you are.  But that’s 1,500 people (at least) in the U.S. who have died, including my mother and uncle, since five years ago began on this day in 2004.

Those 1,500 lives lost matter to me.  They matter to us all.

RIP Phyllis Larson, November 9, 1948-November 10, 2004.

Yesterday, November 2, marked five years to the day I was told my mother wasn’t going to be coming home.  Her neurologist took us into the most remote corner of the floor where my dad and I sat next to each other as we were told she wouldn’t be coming home.  We were hysterical–or at least I was–so we left after that.  It was around 5 pm on election day, 2004.  We had meant to go back into her room to see her again before we left for the night, but since I was such a mess, we walked past her room in a rush, hoping she would never notice how upset we were.

I think she did though.  The nurse told us the next morning that she had had nightmares and hallucinations about snakes crawling on her legs.  (She had always feared snakes).  It was her last communication that made any sense to anyone.  She sank into herself after that night and never came back, save for horrific screams the night she arrived at hospice and a final laugh two days before she died.  She had laughed at her brother’s joke.  Now he is dead too, having passed on last year.  Yes, from the same disease.

I have always known that she saw us upset when it wasn’t our intention for her to see it.  She had seen us walk past her room in our horrible state that day.  And she knew.  I do believe she knew she was dying before we did.  But that day, she knew that we finally knew.  So she withdrew as only a CJD patient can.  It’s like they fall into quicksand, but the quicksand is their own body.

I am telling you this because I can.  Today, I can.  Thoughts of this on November 2 for the last four years have burned me from the inside out.  But at five years now, I can share it.  I was actually surprised yesterday at how little pain I felt.  I just remembered the day.  I was fully conscious of what day it was in my life and what it meant.  But I didn’t feel like crawling into a hole.  My life is still forever changed from the events of October and November of 2004.  You don’t get to go back.  You don’t even get to visit the way it was.  Once you get over this fact, the feeling of loss diminishes.

Some of us grieve again each time we try to bring our memories of our past back to life.  We remember, then we snap back to the present, which is all we really have.  For me, I was like that.  Once I let the past go–and that took some time–the weight lifted.  But I also delved directly into my pain and got through it.  I believe you suffer longer if you bury your pain or ignore it.

My mother is still here, alive in our memories.  But I no longer miss the past where she was alive.  Instead, I remember her fondly as though she were only on a vacation.  She’s still a part of this life of ours, always affecting my father, my stepmother, and I.

“Only love can leave such a mark.”  –U2

Another TV show is tackling the difficult and complicated matter of prion diseases.  This time it’s another Fox show, “The Simpsons,” however, the show does nothing to help my cause of educating people about CJD.  Instead, it does everything to reinforce stereotypes about “mad cow disease.”  Lisa Simpson is the only one who speaks the truth, calling it an “abomination” to feed cows to cows.

I found the clip on Ecorazzi, which does blog about the show with class.  Thank you, Ecorazzi for understanding that prion diseases are no laughing matter.

1. Vegetarians can, and have, contracted CJD.

2. CJD does not make every one of its victims “mad” or aggressive.  Usually when BSE affects a cow, it does alter the personality of the animal. A normally calm cow can become aggressive, but a normally aggressive cow can become calm.

3.  People do not get “mad cow disease.”  BSE is “mad cow disease” and affects cows.  If a person eats tainted meat and contracts a prion disease from it, it is called “vCJD.”

To be honest, I’m intrigued as to what’s going on at Fox.

That’s two shows now working CJD into their plots, even if not calling the disease by its proper name.  I also find it ironic that this ‘Simpsons’ episode shows cannibalism–when cannibalism in Papua New Guinea a couple hundred years ago is believed to have been the beginning of prion disease with Kuru.  There is another interesting moment where a brain comes out of a skull and gets covered with glasses and dentures, in effect personifying the brain.  (Relax, it’s a cartoon).  This also jumped out at me since CJD is a brain disease.  Seeing this reinforces what I’ve believed since “24″ saw Jack Bauer get CJD, that someone at Fox lost someone to CJD.

Who are you?

I see your grief working its way out through your art.  We need to talk–you can do so much for this cause that we share.

Born on Christmas day 1953 to a family of noteable rifle makers, Purdey studied Zoology and Psychology at London University and pioneered an organic farm in his early twenties. His methods, which involved the use of pedigree jersey cows, a self-sufficient arable/legume-grass rotation system and a minimal reliance on concentrated feed, led to high yields.

Purdey had a second highly successful career as a researcher after cows he purchased developed BSE, something his own cows had never suffered from. Purdey’s research led him to challenge the mainstream hypothesis and focus instead on environmental ratios of copper and manganese.

In the year or so before his untimely death, Mark Purdey had become an outspoken critic of the gerrymandering of scientific data relating to clusters of CJD that had become a feature of the mainstream hypothesis, which was, to his frustration, most often disseminated as if it were established fact. In particular, Purdey had begun to focus on the piezoelectric properties of chemicals like Lyddite, which he described as “the common component of the chemical detonators found in the TSE cluster“.

Mark Purdey died of a brain tumour on Sunday 12th November 2006. He is survived by a wife and 8 children.

Born in Much Hadham, Hertfordshire, he was a scion of the famous Purdey family of gunsmiths – a bizarre irony since Mark was incapable of harming any living thing, let alone shooting it.

- Guardian obituary

[Purdey] did not accept the assurances given to him by MAFF and, in 1985, sought a judicial review of the Warble Fly (England and Wales) Order 1982. Following an out-of-court settlement, he was exempted from treating his cattle with OP compounds.

- Extract from the BSE Inquiry

Mark Purdey accepting the Weston A Price Integrity in Science Award 2002

The government’s blanket swine flu vaccination programme is about to begin.

The government has purchased 132 million doses of the vaccine. Apparently that’s enough for two doses for each member of the population. (The UK population is now estimated by the Office for National Statistics at 61.4 million, so in fact there should be 9 million doses left over, but hey, what’s 9 million extra vaccine dose sales between friends?) They are now beginning to think that only one dose may be needed. So they could be paying for as many as 50 million more doses than required.

We know that maths is not the strong point of our nanny State, but let’s leave that aside for a moment.

Even the government admits that swine flu is normally a mild disease. It is a variety of normal flu, which the government has now taken to calling “seasonal flu” to distinguish it from the otherwise nearly identical “swine” variety. Obviously there are people, for example those who have compromised immune systems, for whom it could be dangerous and vaccination might be appropriate. But the whole population?

A public hysteria has been created. Schools have been closed. A special hotline has been set up, specifically to bypass the normal prescription-issuing mechanisms for “anti-virals”. There have been dark hints that the virus may mutate and suddenly become some awful plague, so that thousands might die. The media has had a feeding frenzy on all this, of course. It sells papers! But the foundation for the scare, the information upon which it is based, comes from the public health authorities.

Now that the “epidemic” is abating, we are being told that it will come back in the autumn. I suggest we don’t panic unduly over this latest prediction.

We have been here before.

In 1984, the BSE scare began. Cows began dying in large numbers from the disease. Speculation began that humans might be susceptible, focussing on a disease with similar symptoms in human beings called Creutzfeldt–Jakob disease (CJD). This is an extremely rare disease, so little was known about it.

But now research began in earnest, and a “new type” of CJD was recognised. It was swiftly christened “New Variant CJD”, then shortened to “variant CJD”. Then the public health people came up with a piece of marketing genius, beginning to call it “vCJD”. Note the lower case “v”. A great piece of branding, much like the “i” in “iPhone”.

Public health officials quickly began speculating that “millions might die”, based on little evidence.

The Agriculture Secretary at the time, John Gummer, did his best to calm things down. At the time he was accused of complacency. He has now been completely vindicated.

Millions have not died. CJD remains mercifully fantastically rare (only about three times as common as being struck by lightening).

We should learn a lesson from these two episodes, Swine Flu and BSE. It is time to stop simply trusting government officials who tell us we are in danger. We should demand clear, unambiguous facts, and above all demand to know what evidence they have for their scare stories. This we should especially do when their proposed solution is lots more money to be dispensed by them to protect us from the alleged danger. Suspicions, things that “might” happen, a “range of possible outcomes”, the “precautionary principle” are all nonsense.

It is, in fact, time to stop believing that the motivations of public officials are always pure, heroic and impartial. They are in fact human like the rest of us, and just as susceptible to greed, stupidity and the herd instinct.

So next time you see a lurid newspaper headline about some awful health problem that is about to kill millions, stop and ask yourself who stands to gain the most from the prediction you’re reading. Often you will find it is the people making the prediction.

Update 17th September: The number of swine flu cases has been reported to rise last week to 5000, up from 3000 the previous week. Sir Liam Donaldson, the Chief Medical Officer, was quoted as saying, “We don’t know whether it will be sustained but I think it’s one of the few straws in the wind that we might be seeing an upturn. We would have hoped for a bit more breathing space before it started again but this is still consistent with scientific predictions for another peak before mid October.”

Sir Liam, it is also consistent with the fact that the children went back to school last week. The really obscure clue that Sir Liam seems to have missed is the fact that most of the rise occurred amongst school age children.

Sir Liam, please find something useful to do and stop wasting our time!

klau|s|ens, wird der nationalpark nun kommen?

die politik will es so.

wirklich?

ja, ja, zum beispiel der landrat des rhein-sieg-kreises, fritjof kühn. – und eigentlich die mehrheit der samstag anwesenden. man merkt es ja, wann wie geklatscht wird.

das siebengebirge wird also nationalpark?

es spricht vieles dafür.

darüber wurde informiert?

im prinzip ja – und man muss wissen, dass es ja in bad honnef am 27.9. einen bürgerentscheid gibt, um bzw. gegen diesen nationalpark. und im vorfeld müssen sich jetzt die positionen ordnen.

was ist deine position?

alles ist zerschandelt.

aber das ist doch keine position!

alles wird zugebaut und zugebaut. im siebengebirge wird noch ein baugebiet deklariert – und noch eines. das geht immer weiter. das stoppt keiner. lächerlich!

und dann wollen sie einen nationalpark machen?

das ist kurios, gewiss. es gibt flächen, die dann dazugehören, und dann die flächen außenrum, die gehören nicht dazu.

ist die abgrenzung von drinnen und draußen klar und deutlich?

natürlich ist alles relativ und von menschenhand gezogen. das gebiet ist schon so schlimm zersiedelt, dazu die autobahn A3 und die autobahn A59/verlängert als B42. dann die eisenbahnschienen und deren lauter verkehr. es ist schon alles muntere zivilisation. zu munter!

dann muss man doch retten, was noch zu retten ist.

das denke ich auch. aber wie?

durch einen nationalpark!

jetzt sagen die gegner: dann werden wir nur noch bevormundet und dürfen die geringen restflächen nicht mehr nutzen.

wieso? warum denn nicht?

weil die idee z.B. ist: wir werden wege vermindern, wege schließen – die natur braucht mehr raum. wir werden mehr autos verbannen, die parkplätze im gebiet verringern, usw.

und was fürchten die leute?

viele staus – und wenig freude. dann noch mehr touristen. zugleich behinderungen in ihrem eigenen täglichen tun. auch für ihr gewerbe. für den transport. für alles.

und was denkst du?

ich denke: wenn ich aus 3 wegen nur noch 1 weg mache, z.b. aus drei wanderwegen nur noch einen …

ja?

… dann tummeln sich auf diesem einen weg die leute, die vorher auf 3 wegen gingen.

und dann?

dann habe ich auch in meiner freizeit eine “autobahn”, nämlich eine wanderautobahn durch den vermeintlichen schönen wald und die wiesen und alles das.

so denkst du?

ich gebe nur zu denken! zugleich muss natürlich geschützt und geschützt und geschützt werden. aber wenn man nicht mehr hineindarf, dann hat der mensch natürlich für den direkten freizeitwert verloren. das fürchten auch einige leute.

du träumst von der freien wilden und dennoch begehbaren natur?

diese kennen wir ja kaum noch. überall wird die natur zivilisiert. und selbst das, was wir heute als natur ansehen, ist schon durch menschenhand über jahrhunderte “kultiviert” worden. robinson crusoe hat über das “wilde” leider gesiegt. der mensch hat sich selbst in neue zwänge hinein”entwickelt”.

es sieht alles nicht gut für die natur aus.

nein, nein. das wort “natur” sagt gar nicht mehr das, was es mal sagte.

wir brauchen also neue worte?

ja, für das alte, gute, unzerstörte. für den traum vom wilden. für rousseau. für unsere sehnsucht nach dem, was nicht mehr ist. “rousseautur” vielleicht?

aha.

und immer gibt es handfeste interessen. hotels und pensionen wollen dieses, die ganze touristenindustrie jenes, die jäger solches, die naturschutzverbände meinen dieses – das alles kristallisiert sich nun um den nationalpark siebengebirge. wie stets!

ich denke, der heißt jetzt anders.

das ist doch der trick: um den widerstand wegzupolieren, haben sie die idee vom ersten “bürgernationalpark” erschaffen, BÜRGER, verstehst du?

ich verstehe alles. trick 17. und dein gedicht?

eines lautet so:

ARTENVIELFALT:
NATUR ODER GESETZ

Dieser Landschaftsraum
Wird unser Nachtrag als
Beitrag zum Durchschlag
Vom Vortrag über den
Entwurf des Gesetzes
Über den Verband
Bürgernationalpark
Siebengebirge aus
Naturschutzfachlicher
Sicht einer für uns
Umsichtigen Fragestellung
Als Erholungsdruck für die Dichtkunst

Copyright Klau|s|ens in allen Schraibwaisen und Schreibweisen, u.a. als KlauBAUMsBAUMens oder Klau(s)ens oder Klau&s&ens, LIVE geschrieben, am 5.9.2009, Samstag, in Königswinter, Aula der Schule CJD, gegen 9:45 Uhr. Es spricht Dr. Alexander Schink, Staatssekretär im Ministerium für Umwelt und Naturschutz, Landwirtschaft und Verbraucher …

und welche veranstaltung war das jetzt?

ich sage es dir ganz genau:

5. September 2009,
Ort: Aula der Jugenddorf-Christophorusschule Königswinter, Cleethorpeser Platz 12, 53639 Königswinter,
Ausrichter: NUA,
Leitung und Vorbereitung des Veranstaltungsprojektes: Peter Schütz

Teilnehmerkreis: amtlicher und ehrenamtlicher Naturschutz, Vertreter von Kommunen, Verwaltungen und Verbänden, Bevölkerung der künftigen Nationalparkgemeinden und speziell am Nationalpark Interessierte
NUA, Siemensstr. 5, 45659 Recklinghausen, Tel. 02361/3050, Fax 02361/3053340,
E-Mail: poststelle[ÄTT]nua.nrw.de, www.nua.nrw.de
Kontakt: Peter Schütz, Tel. 02361/ 305-3318, peter.schuetz[ÄTT]nua.nrw.de

Öffentliche Informationsveranstaltung Bürgernationalpark Siebengebirge

Die öffentliche Veranstaltung informiert über den aktuellen Stand der Diskussionen zur möglichen Einrichtung eines Nationalpark Siebengebirge. Das Siebengebirge soll neben dem Nationalpark Eifel der zweite Nationalpark von Nordrhein-Westfalen werden. Im März 2007 fiel dazu der Startschuss für den öffentlichen Meinungsbildungsprozess.
Nach einer weiteren öffentlichen Informationsveranstaltung mit fast 400 Teilnehmern am 7. Februar 2008 in Bad Honnef, intensiver Arbeit in Facharbeitsgruppen, Beratungen in den Ausschüssen, den Räten der Städte und dem Kreistag sowie weiteren Gremien informiert nun die dritte große öffentliche Informationsveranstaltung – dieses Mal in Königswinter – über entscheidende Ergebnisse der bisherigen Arbeit, nämlich über den Entwurf des Verbandsgesetzes, das die Zusammenarbeit aller Beteiligten im künftigen Bürgernationalpark regelt, den Entwurf der Rahmenvereinbarung, einem Vertrag, der für die nächsten 20 Jahre die gemeinsamen Ziele im Nationalpark und seine Finanzierung verbindlich festlegt und den Entwurf der Nationalparkverordnung nebst Zonierungskarte und Wegeplan, die den rechtlichen Rahmen für ein gedeihliches Miteinander von Mensch und Natur bildet.

Programm

9:30 Uhr

Grußwort
Peter Wirtz, Bürgermeister der Stadt Königswinter

9:40 Uhr

Eröffnung: Rückblick und Ausblick im Nationalparkprozess
Thomas Neiss, MUNLV (Moderator)

9:50 Uhr

Vorstellung des Entwurfs des Gesetzes über den Verband Bürgernationalpark Siebengebirge
Staatssekretär Dr. Alexander Schink

10:05 Uhr

Vorstellung des Entwurfs der Rahmenvereinbarung über die Ausgestaltung des Bürgernationalparks Siebengebirge
Frithjof Kühn, Landrat Rhein-Sieg-Kreis

10:20 Uhr

Vorstellung des Entwurfs der Verordnung über den Bürgernationalpark Siebengebirge mit Wegeplan
Harald Brandt, Bezirksregierung Köln

10:50 Uhr Kaffeepause

Herbert Krämer vom VVS saß auch vorne auf dem Podium, VVS (Verschönerungsverein für das Siebengebirge)

11:20 Uhr
Zeit für Nachfragen und Diskussionsbeiträge aus der Veranstaltung mit Partnern der Rahmenvereinbarung

13:00 Uhr Geplantes Ende der Veranstaltung

ORIGINALVERSION mit Fettdruck und allen Bildern
und allen Links bei KLAUSENS BLOGG (mit 2 G !!!)
KLAU|S|ENS – LOG – W E L T L I N G
http://klausens.blogg.de

HOMEPAGE VON KLAU|S|ENS: http://www.klausens.com

I see Mad Cow Disease has moved back into the news.   Not in the way I am waiting for – but in a call for coroners to check for the infection when they are poking about in dead people’s brains. 

Apparently, despite the government wanting them to look for something they hope is not there – those cheeky coroners have decided they are not going to carry the can on this one.

It’s a strange beast, Mad Cow Disease.  Back in the 1980s, the hysterical media were quick to show us the one and only film they seem to have of a staggering, slightly loopy looking cow – and breathlessly telling us we were all going to die.  Then John Gummer, the then agriculture minister somewhat callously shoved a burger in his daughter’s face, she didn’t drop down dead and it all went away.

Until now.  When we are again being told that millions could be carrying the disease… but hey we don’t know it.  Which seems all well and good to me.  The time to worry is surely when we start to dribble and fart a lot and eat grass with a slightly manic look on our bovine faces.

Except I understand that there has been an increase in vegetarianism in recent years.  Worse still is the huge increase in mental illness such as dementia.  That really is increasing at an exponential rate.

So far, despite everybody in the country having eaten dozens if not hundreds of hideous burgers made from whatever vaguely meaty part of a cow can be rendered down into gristle – only 164 people have dies from the disease since the 1980s.

Surely that should put it rather low in our public consciousness behind say sending our soldiers to die in hot dusty faraway places for no good reason – or addressing the annual carnage on our roads.  But no… Mad Cow Disease has popped back into our lives.

It’s enough to make you mad.

I recently wrote some researchers have warned about the possibility of CJD/Alzheimer’s being spread by farm-raised fish that are fed prion contaminated beef. A study published 2 days ago confirmed this possibility.

I know many people who have parents or grandparents that are going through this horrible condition. I’ve witnessed first hand Christina’s grandfather with Alzheimer’s slowly become like a confused child in a 78 year old body dependent on others for even the most basic needs. Christina pointed out that it is also especially hard for loved ones to cope emotionally due to the constant care and grief over the loss of a family member even though their physically body is still “alive.”

According to western medicine there is no known cure and rates are increasing at a shocking  9000% over the past two decades. So I see preventative medicine in the form of a balanced diet that lacks possible animal-based sources of prions and is instead full of anti-inflammatory phytonutrients playing a huge role here. It sure is cheaper than hospital visits and 24/7 care. And in this case important not only for our personal health but that of our family and future possible care takers.

With an explosive 9000% increase in CJD/Alzheimer’s in the past two decades, some scientists are beginning to point to our food as a possible major risk factor. Beef is well known in health circles for being a source of prions that cause the disease and diary has recently been linked to as a potential source. Fish is often claimed to be a healthy alternative to red meat, but there are many risks like toxin accumulation (mercury, arsenic), parasites, and now CJD/Alzheimer’s as well. I’d be extra cautious to know where my food came from if not eating a local, vegan diet.

From naturalnews.com:

There is probably no illness that has more terrifying symptoms, or a more ghastly outcome, than variant Creutzfeldt-Jakob disease (vCJD) — best known as mad cow disease. Abnormal proteins called prions found in brain tissue of cows suffering from bovine spongiform encephalopathy (BSE) can cause vCJD in humans who eat meat from the animals. These mad cow disease-causing prions can literally result in people losing their minds because the infectious particles eat away at the brain, leaving tiny sponge-like holes. There is no treatment available and death always follows.

With government regulations notoriously lax when it comes to testing for BSE in the food supply, many people have given up eating beef in hopes of protecting themselves from exposure to mad cow disease. But an article just published in the Journal of Alzheimer’s Disease suggests there may be another ticking time bomb source of vCJD — farmed fish.

In a paper entitled Bovine Spongiform Encephalopathy and Aquaculture, University of Kentucky neurologist Robert P. Friedland and colleagues point out that fish consumption is widely recommended because omega-3 fatty acids are known to reduce the risks of cardiovascular and Alzheimer’s diseases. However, the scientists have doubts that the health benefits of farmed fish outweigh a potentially deadly danger. “We are concerned that consumption of farmed fish may provide a means of transmission of infectious prions from cows with bovine spongiform encephalopathy to humans, causing variant Creutzfeldt Jakob disease,” they stated.

Dr. Friedland and his team point out that farmed fish are fed byproducts rendered from cows — a totally unnatural source of food for fish. The risk of transmission of mad cow disease to humans who eat farmed fish would seem to be slim because there are often barriers between species that help prevent infections. But, according to the Journal of Alzheimer’s Disease article, there are several reasons to be concerned about fish spreading mad cow to humans.

First, fish could be carriers of the disease from eating infected meat products, even though the fish themselves are not obviously infected or sick. In addition, it is possible that eating prion-infected cow parts could result in fish experiencing pathological changes that permit the prion infection to be transmitted between the two species. Based on these worrisome possibilities, the scientists are calling for government regulators to ban feeding cow meat or bone meal to fish until this common practice can be shown to be safe.

“We have not proven that it’s possible for fish to transmit the disease to humans. Still, we believe that out of reasonable caution for public health, the practice of feeding rendered cows to fish should be prohibited. Fish do very well in the seas without eating cows,” Friedland said in an interview with the Kentucky Post newspaper.

“The fact that no cases of Creutzfeldt Jakob disease have been linked to eating farmed fish does not assure that feeding rendered cow parts to fish is safe. The incubation period of these diseases may last for decades, which makes the association between feeding practices and infection difficult. Enhanced safeguards need to be put in place to protect the public,” Friedland stated.

For more information:

http://www.j-alz.com/issues/17/vol1…

http://www.cdc.gov/ncidod/dvrd/bse/

http://www.kypost.com/news/local/st…

http://www.cdc.gov/ncidod/dvrd/vcjd…

Talking about blood here.

We Brits are banned from giving it in France because we are full of mad cow disease, so this doesn’t concern us personally, but here’s something that I find a little worrying.

“Don du sang” is a frequently seen sign in towns and villages – it means “Blood donations”. There’s another version, though: “Collecte du sang“, meaning “Blood collections”, and I can’t help finding that somewhat sinister, overlaid with shades of Big Brother.

Giving blood implies a voluntary activity; having it collected, on the other hand, summons visions of stealthy tankers stopping outside houses during the small hours, with long supple tubes being fed through the windows by men in white overalls, tapping into the vital juice of the oblivious, slumbering residents.

Maybe I’m over-reacting, but just to be on the safe side, in case the “collectors” call,  we’ve decided to put a large notice on the gate: BEWARE, CONTAMINATED ENGLISH BLOOD. 

Le 19 Juin, le CJD (Centre des Jeunes Dirigeants d’entreprises) organisait son congrès régional à Lyon.

Un groupe Multiwizz a alors été crée pour l’occasion afin de permettre aux 130 jeunes dirigeants présents de recevoir des informations pratiques par SMS avant et pendant le congrès.

Pour rendre la conférence innovante, l’organisateur du congrès a opté pour une utilisation permettant aux membres de l’assistance d’interagir directement par SMS avec l’animateur du débat. Ce dernier a pu ainsi avoir accès depuis son PC à l’ensemble des questions qui ont été posées pour ensuite les transmettre aux intervenants des tables rondes.

Voilà donc une autre utilisation de Multiwizz qui pourra en inspirer beaucoup d’autres !

L’équipe Multiwizz

Our mail box is always full of advertising flyers and today was no exception. The exception came when rather than chucking it straight in the recycling bin, I took it home. The flyer caption was “Project Fire Engine Red – Blood Donor Clinic.” Strange that this had suddenly popped up as only a few days ago I was discussing blood donations with my in-laws.

Blood Donor

Since the age of 17, I have been a regular blood donor in Scotland and have proudly given over ten pints during the last 6 years (although my dad will boast that he has given over 50 since he started donating!). So the flyer prompted me to pick up the phone and call for an appointment. I spoke with the nurse and she asked if I was a first time donor, as she didn’t have my details on file. I informed her that although this would be my first Canadian donation, it was by no means my first time – I went on to tell her about moving here from Scotland.

blood bag

I was shocked (and furious) when the nurse informed me that I am NOT A CANDIDATE (and probably NEVER will be) for blood donation in Canada. Why? Because I lived in Europe between the years of 1980-1996…..  and am therefore considered to be at risk of hosting a CJD (Creutzfeldt–Jakob disease) infection.

Prompted to try and find some basis for this discrimination, I have spent the last few hours trawling the internet for facts on the history of CJD in both the UK and Canada. Unfortunately, I’m unable to find conclusive UK infection figures for the years 1980-1996. However, the advance of the disease in the UK was not believed to have peaked until at least 2001 (BBC, 2005) so I think that the figures I have found (for 1995-2004) are still relevant in considering my ‘risk’ as a donor. So, according to the BBC (British Broadcasting Cooperation) 141 people in the UK died of the disease during this 1995 – 2004 period, or an average of 14 in each of these 10 years. Now, rounding The UK’s 2001 national census figures down slightly to 58,789,000 (to make the math easier) that means that there was approxiately one CJD fatality per 4,199,000 British residents, per annum. Not to be obtuse, but considering that Scotland has a population hovering around 5 million in recent years – its conceivable we could have had only ONE person per year fatally infected with the disease!

It is estimated that, worldwide, between 0.5 and 1 case of CJD per million population occurs annually.  A recent review of mortality data in the United States has shown that the average annual incidence of CJD in that country is 0.9 deaths per million population. Overall, 334 deaths attributed to CJD were recorded in Canada in the 15-year period from 1979 to 1993. The number of deaths ranged from 14 to 34 per year (Public Health Agency of Canada).

I know that these statistics are not the easiest to compare, but I think you see my point – that CJD does not only affect Europeans! Nor is the infection apparently any more common in Europe than North America.

“Every 60 seconds, someone in Canada requires blood or a blood product!” (Canadian Blood Services, 2009).

“One unit of blood can save or improve up to 3 lives.” (Canadian Blood Services, 2009)

So what’s the issue? Why don’t scientists get on with developing a blood test that can identify CJD and start saving lives by freeing up ‘risky’ donors like myself. A blood test has been in the pipe-line for years now but due to the fact that it carries a small risk of identifying  the disease in people that are not actually affected, completion of development and production hasn’t been encouraged. The issue is that legally donors would have to be told if their CJD tests were positive, even if there was a chance that the test result was false.

Patient

If he doesn’t die of a blood transfusion/lack of transfusion then surely the hospital food will finish him off!

“1 in 2 Canadians is eligible to give blood. Last year 1 in 60 actually did.” (Canadian Blood Services, 2009).

Maybe this would help…

Drive through blood

Le Congrès Régional “De nouvelles valeurs pour entreprendre” organisé par le CJD se déroulera le 19 juin 2009 de 17H30 à 19H30 au Pavillon Joséphine – Parc de l’Orangerie à Strasbourg :

AU PROGRAMME :

• Conférence -débat avec Philippe BLOCH, chef d’entreprise, journaliste et auteur de Best Sellers sur la création d’entreprise,
• mise en scène des membres du CJD dans un théâtre d’improvisation sur le thème de la vision d’entreprise.

EN SAVOIR PLUS :

Le site du CJD Alsace : http://www.cjdalsace.com/

This sweet little nursery rhyme was of course written about the bubonic plague, the word bubo being Greek for groin, the area of the body that the plague affected. Men suffering bubonic plague had to make sure their trousers were securely fastened before sneezing to avoid their infected parts dropping off and falling down their trouser legs.

Over three hundred years after the Great Plague excavations of plague pits in London have found the plague bacillus still alive in victims’ hair. By all accounts it was seriously worse than man-flu.

     Also more serious than man-flu, I see the media are doing their best to stir up a frenzy with bold headlines declaring that we’re all imminently going to die of swine-flu, just as we all died of bird-flu, mad cow disease, ebola, SARS, CJD, DVD and PMS.

     At times like this I wish I’d invested my money in shares in facemasks.

The Mexican original.

His and hers.

The joker.

Also protects for lamb-flu.

The Amazonian lost tribe.

Total protection.

Safe from even the worst of sneezes.

Comes in a range of colours, including black and white.

Die Schweinegrippe, die uns nach Menschen-BSE, Vogelgrippe und SARS einmal mehr komplett auslöschen wird, kann die Weltwirtschaftskrise, die uns in naher Zukunft zu brandschatzenden Horden mutieren lässt, deutlich verschärfen.

Weniger problematisch wird sich nach Expertenmeinung der Ausfall der Arbeitskraft erweisen. Gefährdet sind nach neuesten Studien vorallem Menschen und Hartz-IV-Empfänger, deren Immunsystem durch übermäßigen Tabak- und Alkoholkonsum geschwächt ist und die aufgrund dessen zusätzlich in unhygienischen Verhältnissen leben.

Aufatmen im Wirtschaftsministerium?

Bedauerlicherweise nein. Die Schweinegrippe könnte weltweit zu einer Krise am Absatzmarkt für Schweinefleisch führen. Führende Wirtschaftsexperten warnen vor Gewinnverlusten großer Lebensmittelkonzerne von bis zu 2,5%. Massenentlassung seien zu erwarten. Die Börse hat bereits reagiert.

Schuld an dem Debakel ist der diskriminierende Name. Versuche, die tödliche Pandemie umzubenennen, bspw. in mexikanische Grippe oder Amerikagrippe, scheiterten an Einwänden der Medien.

“Wir haben einen informativen Auftrag.” so Hubertus P., Chefredakteur einer großen Zeitung. Und weiter führt er aus, die Bevölkerung dürfe nicht im Ungewissen gelassen werden, weshalb es seine Redaktion sehr ernst nähme, objektiv über die Terrorgrippe zu informieren. Panikmache sei da fehl am Platze, meint Hubertus P. Die neue Pest interessiere nun einmal mehr als das aktuelle Tagesgeschehen. Aus gutem Grund, schließlich habe die Todesgrippe bereits Deutschland erreicht.

Es wäre unverantwortlich, den Namen der tödlichen Schweinepest etwa in amerikanische Grippe umzuändern und somit die Bevölkerung denken zu lassen, die Terrorseuche wäre mit einer normalen Grippewelle zu vergleichen. Eine solche Verharmlosung diene niemandem, sagt Hubertus P. und verweist auf unverantwortliche Aussagen sogenannter Virologen, die von unverhältnismäßiger Aufregung sprechen.
Er könne Kollegen nicht verstehen, die solchen vermeintlichen Experten Raum für ihre Äußerungen gäben.  Das diskreditiere den gesamten Berufsstand. Die Todespandemie könne somit dem Journalismus indirekt schweren Schaden zufügen.

Bleibt zu hoffen, daß dem nicht so ist. Schließlich zeigt uns der Schweineterror einmal mehr, wie wichtig mediale Aufklärung ist. Und so lautet das Fazit des Redakteurs denn auch: “Schwarze Schafe die mit reißerischen Artikeln vorallem finanzielle Interessen verfolgen, wird es immer geben. Wir Journalisten, die wir uns im Dienste der Menschheit sehen und schlichte Aufklärungsarbeit über die tödliche Schweineseuche betreiben, dürfen uns davon nicht beeinflussen lassen.”

Ich habe in anderen Threads schon was zur “Münsinger Schule” berichtet. Das geplante Projekt, ein Internat für begabte Kinder mit ADHS, wäre ein Pilotprojekt geworden, mit wissenschaftlicher Evaluation und allem drum und dran. Vor allem wäre es aber für die Kinder dort eine einzigartige Möglichkeit gewesen, ihr Potential trotz ADHS zu entfalten.  Es gab Fachleute, ausgebildete Pädagogen, kurz – Experten zum Thema ADHS waren vorhanden! Klar, das Ganze stand von Anfang an finanziell auf wackeligen Füssen, war sogar schon fast vor dem Aus. Eltern und Mitarbeiter haben sich dann beineausreißendermaßen angestrengt, um zu retten was zu retten ist.

Schliesslich wurde ein Geldgeber gefunden, nämlich das umstrittene CJD, ein  Christenverein, der bundesweit mehrere Schulen betreibt und im Verbreiten dogmatischen Aberglaubens – “Kernkompetenz Religionspädagogik” – sein Selbstverständnis findet.

Und nun, wie befürchtet, das (Alb-Bote):

Schulkonzept wird nicht mehr umgesetzt

Münsingen Der Begriff “Münsinger Schule” steht für die Einrichtung und für das von der Esslinger Diplom-Psychologin und Diplom-Heilpädagogin Cordula Neuhaus entwickelte und hoch gelobte Konzept für Kinder mit ADHS. Es ist fraglich, ob davon überhaupt etwas übrig bleibt. Über den zukünftigen Ort der Schule (sie ist zurzeit in einem Ausweich-Quartier in Bremelau) wird verhandelt, inhaltlich hat ein Abschied anscheinend bereits stattgefunden. “Meine Konzeption wird in keinster Weise mehr umgesetzt. Darüber bin ich sehr traurig,” sagt Cordula Neuhaus. Gestrichen sei die pädagogisch-therapeutische Leitung, der Klassenrat, das Mentorat, die Supervision und die Tagesbetreuung durch Sozialpädagogen, ebenso seien Projekte weggebrochen. Es heißt, dass die jeweiligen Hausärzte über die Medikamentation entscheiden und diese während des Tages nicht mehr durch eine erfahrene Fachkraft überwacht wird. Cordula Neuhaus: “Von der gesamten Vorgehensweise muss ich mich leider distanzieren.” vau

Durch den Wegfall kompetenter Fachleute werden nun Stellen frei für Religionspädagogen und Vorbeter. Gutmenschentum ersetzt erfahrene Fachkompetenz. Das ist das Ende eines großen Traums. Ich bin stinksauer

Bild: Maren Beßler, Pixelio

I was browsing through my favourite second-hand bookshop today and I came across the following book: Cannibals, Cows and The CJD Catastrophe by Jennifer Cooke. The following is an excerpt of Cooke’s own description of her book:

From the jungles of Papua New Guinea in the 1950s, through Australian fertility clinics, to the butcher shops of Britain in the 1990s, a creeping epidemic has claimed the lives of thousands of men, women and children.

The Eastern Highlanders of PNG called it kuru – the shivering disease. In the West, we know it as Creutzfeldt-Jakob disease (CJD). To the world’s media, it is now notorious as “Mad cow” disease.

All three are among a group of rare human and animal diseases that induce neurological disaster – microscopic holes in the brain, sticky plaques of protein that prevent vital messages between nerve cells – and a plethora of symptoms including staggering, jerking, memory loss, personality change and dementia. Collectively, they are known as transmissible spongiform encephalopathies, or TSEs. A more recent term, “prion” disease, to denote the apparent cause of these diseases by a “proteinaceous infectious particle” in the brain, is also widely used.

TSEs, or prion diseases, are not only infectious, they are also inheritable in a very small number of cases. They have no cure and no treatment and no reliable pre-mortem test, so absolute confirmation cannot be made until a post-mortem examination of thin slices of the brain under a microscope reveals massive damage in the form of spongy holes.

Well over 3,000 former cannibals from the Fore area of PNG’s mountainous Eastern Highlands succumbed to kuru after repeated feasts in which they ate dead relatives as a mourning rite. The women and children in particular ate the brains and smeared them on their bodies as a mark of respect. There is speculation that this practice may have led to kuru infection via either oral or intraocular routes when, for instance, mothers wiped tiny children’s eyes with their hands.

CJD and its related diseases incubate in humans for decades. Kuru cases are still emerging, despite the cessation of cannibalism in the late 1950s. The most recent case had an incubation period of well over 40 years.

The legacy of accidental CJD transmission will continue for years to come.

NOTE:

I will provide a little book review of my own focusing on CJD’s relationship with the Fore people of PNG once I get through this book . Fascinating stuff.

If you’re among the many Americans who never miss an episode of the Fox TV drama “24″, you know that this season’s plot includes a bioweapon said to contain a deadly “prion” gas. I thought some readers might be interested to know more about prions and whether a prion-based bioweapon is actually a realistic possibility.

A “prion” is a simple protein which is folded up in a way that makes it unsually stable and strong. When a prion encounters normal molecules of the same type of protein, it causes them to fold up in the same way, effectively reporoducing itself by conversion. In the human body, prions can form an amyloid plaque which disrupts and destroys the central nervous system. Because of the unusual structure of the prions, this process has so far proven to be irreversible and inevitably fatal. So “24″ is correct in suggesting that anyone infected with prions would almost certainly die. The best known prion disease is Creutzfeld-Jakob disease (CJD), as well as the animal disease bovine spongiform encephelopathy (“mad cow” disease).

However, prions actually do not make a good candidate for a bioweapon – especially for terrorists –  for a number of reasons. First of all, the only known method of prion transmission is through ingestion or direct introduction into the bloodstream. There is no such thing as a prion “gas” that you could inhale and become infected, the way Jack Bauer did. This also means that prions are not contagious from one person to another (which “24″ got correct.)

Second, as deadly as prion disease is, it has a long incubation period. This means that it can be quite a while after infection before a person begins to show symptoms. That’s not good for a weapon where you’d prefer to see more immediate results. So even if someone were able to invent a prion gas as in the show, it probably would not be the weapon of choice for someone who wants to spread terror,  given the plethora of toxins that are easier to come by. Still, you have to give the writers credit for coming up with something fact-based that sounds sufficiently exotic to viewers.

How do you “redirect” a dementia patient who wants to “go home” or  speak to someone who is no longer alive? How do you respond to a loved one who is living in a reality which isn’t yours? Here are a few tips that I posted yesterday on  Defeat Dementia, a Facebook group which provides information and support to caregivers of dementia patients:

• Don’t worry about convincing her that her loved one has already passed away, but to pay attention to the emotion she is expressing.

• Sometimes it is helpful to encourage the patient to talk about her loved one. Try questions like “what did you do with your (mom) when you were little?”, “What do you want to say to your (mom)?”

• Perhaps having a photo of her loved one available that you can look at together, ask her to tell a story about her loved one, might be strategies that would satisfy her.

• If necessary, some caregivers have tried a white lie, like “Your (mother) lives someplace else now.” or “I can’t take you there today. Maybe tomorrow.”

• It’s helpful to try to stay in the patient’s reality, and the death of her loved one is no longer a part of her reality, so saying her (mother) is dead only confuses her.

Source: UCSF Memory and Aging Center

For more information, visit the Defeat Dementia website, join our Facebook Group, visit the UCSF Memory and Aging Channel on YouTube, or check out UCSF’s Memory and Aging Center website.

Il British Medical Journal torna nel numero di oggi a interrogarsi sul delicato tema dello screening preliminare sui donatori di sangue, e in particolare sull’opportunità di continuare a rifiutare le donazioni provenienti da uomini che fanno o hanno fatto sesso con un altro uomo, a prescindere dal fatto che si tratti di sesso protetto o promiscuo, con un solo partner convivente o con molti partner occasionali (Bad blood: gay men and blood donation, solo per abbonati).
La premessa è semplice: sull’onda delle trasfusioni contaminate che sconvolsero il mondo delle donazioni attorno all’inizio degli anni ottanta (con virus HIV ma anche con il virus dell’epatite C), gli esperti cercarono di individuare le misure più efficaci per eliminare il rischio di contagio.
I test sulle sacche si sangue prelevato si fanno, ma da soli non offrono garanzie sufficienti, per cui gli aspiranti donatori vengono sottoposti a un questionario con cui si cerca di capire se presentano caratteristiche, si potrebbe dire fattori di rischio, tali da sconsigliare l’uso del loro sangue. Una delle cause di esclusione, per esempio, è il fatto di aver subito trasfusioni in precedenza (anche perché in passato i controlli sul sangue erano meno attenti).
Ora si stanno accumulando i pareri di esperti secondo i quali il criterio che esclude in assoluto gli uomini omosessuali non trova giustificazione scientifica: il BMJ ha chiesto a due esperti favorevoli e contrari a questo bando di elencare i motivi alla base della loro posizione (il confronto “Testa a testa” contrappone il giornalista scientifico Bob Roehr, secondo il quale i gay devono poter donare il sangue se non presentano altre controindicazioni, al patologo Jay P Brooks, che continua a pensare che il rischio di contagio sia troppo elevato.
Secondo la dettagliata disamina di Bob Roehr (che conosco e stimo da anni grazie alla comune iscrizione alla National Association of Science Writers, alla Association of HealthCare Journalists e alle loro mailing list) ci sono molti altri elementi di rischio più concreti e temibili rispetto al fatto di fare sesso con un altro uomo, che però vengono considerati – con ottime ragioni – irrilevanti e non tali da giustificare l’esclusione di un potenziale donatore.
Non si deve dimenticare, infatti, che in tutto il mondo c’è costante carenza di sangue, e quindi scartare potenziali volontari senza una solida giustificazione (magari sulla base di un preconcetto culturale o religioso non confermato dai dati scientifici) vuol dire ridurre le probabilità di guarigone o di sopravvivenza di qualche malato bisognoso.

Una “risposta rapida” pubblicata sul sito del BMJ chiarisce bene – secondo me – il concetto: dopo aver invitato a distinguere tra “omosessuale” e “uomo che ha fatto sesso con un altro uomo” (categoria che comprende eterosessuali che accettano di farlo per soldi), la dottoressa californiana Margareth Allen segnala un’altra assurdità.
Lei stessa oggi non può donare il sangue negli Stati Uniti per il solo fatto di aver passato complessivamente più di tre mesi in Gran Bretagna, dove in passato si sono avute le epidemie di encefalopatia spongiforme bovina e alcuni casi di malattia di Creutzfeldt-Jacob (CJD): “Forse anche i modelli statistici relativi alla malattia di Creutzfeldt-Jacob andrebbero rivisti” scrive.

Ecco, in sintesi, lo specchietto del BMJ sulla posizione di alcuni paesi nei riguardi delle donazioni da maschi che hanno avuto rapporti sessuali con altri maschi.

Gran Bretagna (www.blood.co.uk) — Esclusione a vita per gli uomini che abbiano avuto anche un solo rapporto sessuale con un altro uomo.

Spagna (http://donarsangre.org) — Verso la fine degli anni Novanta la Spagna ha modificato il criterio, che non riguarda più gli uomini omosessuali ma tutti gli individui che hanno avuto rapporti sessuali promiscui. La Catalogna (la regione autonoma della “invitante e tollerante” Barcellona) prevede il bando per chiunque abbia avuto più di un partner sessuale nei sei mesi precedenti alla donazione.

Francia (www.dondusang.net) — Alla fine del 2006 il Ministro della Salute annunciò che l’esclusione a vita degli omosessuali dalle donazioni sarebbe stata cancellata a breve, ma all’annuncio non sono ancora seguiti i fatti.

Italia (www.avis.it) — Il bando formale nei confronti degli omosessuali è stato cancellato nel 2001, ma il sesso tra due maschi viene considerato “comportamento a rischio” tale da valere l’esclusione a vita.

Nuova Zelanda (www.nzblood.co.nz) — Il bando vale per chi ha avuto rapporti con un altro uomo negli ultimi dieci anni, ma nel 2008 un comitato consultivo ha suggerito di ridurre il periodo a cinque anni, e di specificare quali attività sessuali giustificano l’esclusione.

Australia (www.donateblood.com.au) — L’esclusione vale per l’attività sessuale dell’ultimo anno, con domande specifiche sul tipo di attività.

Stati Uniti (www.fda.gov/cber/faq/msmdonor.htm) — Sono esclusi dalla donazione tutti gli uomini che hanno avuto rapporti omosessuali dopo il 1977.

Canada (www.bloodservices.ca) —Sono esclusi dalla donazione tutti gli uomini che hanno avuto rapporti omosessuali dopo il 1977

Here is  a brief CJD FAQ, taken from UCSF’s Memory and Aging Center’s website. To learn more, visit the CJD website.

What is CJD?

Creutzfeldt-Jakob disease (CJD) is a human prion disease caused by a normal protein that becomes misshapen into a “prion”, builds up in the brain and disrupts normal brain function. It is a rare disorder that is fatal, usually within 6 months of diagnosis and a year of the first symptom. In the United States, there are about 300 new cases per year.

Creutzfeldt-Jakob disease (CJD) belongs to a family of diseases called “prion disease” [pree-ahn] caused by abnormal “prions”, microscopic infectious agents made of proteins. Prions cause a number of diseases in a variety of mammals, including bovine spongiform encephalopathy (BSE or “mad cow disease”) in cattle and scrapie in sheep.

What are the Signs and Symptoms?

Typical first symptoms include personality changes like anxiety and depression, memory loss, confusion and impaired thinking. Difficulties with balance and coordination as well as involuntary, jerking movements are also very common. People eventually lose the ability to move and speak. Pneumonia and other infections often occur in these patients and can lead to death.

What are the Tests?

When a diagnosis of Creutzfeldt-Jakob disease (CJD) is suspected, your doctor will likely order a number of tests. These can be helpful to either exclude other neurological diseases or support the CJD diagnosis.

Can I Participate in Research?

The CJD research at UCSF’s Memory and Aging Center focuses on understanding prion disease, diagnosing it earlier and more accurately, and developing treatments for CJD.

Other Resources

Please visit CJD Aware! a wonderful organization which provides information and support.

Get involved! Join the Defeat Dementia group on Facebook. Meet others in the fight against degenerative brain disorders such as Alzheimer’s disease (AD), non-AD dementias, including Frontotemporal Dementia and Creutzfeldt-Jakob disease (CJD) and others.

Here’s a link to the CJD video playlist from UCSF’s Memory and Aging Channel on YouTube.

Here’s a video featuring Dr. Michael Geschwind about the basics of Creutzfeld-Jakob Disease:

I am sad to report that Internet industry legend Mike Homer has died today of CJD. This news was first reported this evening by Kara Swisher in her BoomTown blog. Kara writes:

We all liked Mike. In fact, we all loved the pugnacious, energetic and restlessly entrepreneurial Silicon Valley exec.

Sadly for those who knew him, Mike Homer died today at his home surrounded by family and friends, after a long battle with a severe illness. He was 50.

Homer is survived by his wife, Kristina, and three young children: James, Jack and Lucy.

His funeral is at Saint Raymond’s Catholic Church in Menlo Park on Thursday.

In 2007, Homer was diagnosed with Creutzfeldt-Jakob disease.

A rare, neurodegenerative “prion” disease, which in Homer’s case has occurred sporadically rather than via infection (the well-known variant that occurs in animals is called mad cow disease), CJD’s incidence is one case in a million annually, and few survive beyond a year after exhibiting symptoms.

His illness inspired his family and many friends to find treatments and a cure for the cruel disease and include the man–Dr. Stanley Prusiner–who won the Nobel Prize in 1997 for discovering prions, infectious agents that are at the heart of CJD.

Mike Homer was treated by specialists from UCSF. Homer’s fight made a tremendous impact on those who have been researching this devastating disease and raising public awareness about this and other forms of dementia.

Read about the Fight for Mike and Defeat Dementia campaigns here.

To learn more about current research and treatment options for CJD and other neurodegenerative diseases as well as how you can help, visit UCSF’s Memory and Aging Center’s CJD website or YouTube Channel.