Saturday, May 9, 2009
Message from Jenny's Parents
We, Barb and Phil, know of no better way to honor Jenny's memory than to help the neurologists and immunologists who continue to investigate the causes of her death. If you know of any cases of young people between the ages of 9 and 30 who have experienced weakening and/or prolonged paralysis, please send a note to this blog. We will forward the information to medical professionals who are investigating these cases. Please note that we are interested in all such cases, regardless of whether they are male or female, or possibly linked or not linked to the HPV vaccine.
Monday, April 13, 2009
Jenny Is Dead, But Her Question Stands
Barbara Mellers, Philip Tetlock, and Barbara Shapiro
On a sunny afternoon in May 2007, a tearful Jenny told her mother how her seventh-grade gym class laughed when she tripped on a hurdle that everyone else cleared easily. A few weeks later came the odd limp. Gradually, weakness spread; her muscles atrophied; her world shrank.
Jenny’s parents frantically rushed her to an ever wider range of specialists, to no avail. By spring 2008, Jenny was a quadriplegic who could breathe only with machine support. She clung to life for almost a year but she never made it to see another spring.
No one knows exactly when Jenny’s disease began—or what disease she had. World-class neurologists suspect Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS). This relentless killer spares the mind, while methodically destroying the body’s motor neurons until the patient body slips into total, irreversible paralysis.
Yet medical opinion is not unanimous. The CDC estimates the odds of ALS among teenage girls at 1 in 3 million, less than those of being struck by lightning. A far more common cause of paralysis among teenage girls is autoimmune disease.
This is why world-class immunologists suspect that Jenny had a potentially treatable autoimmune disorder mimicking ALS, possibly triggered by the Gardasil vaccination – for protection against the virus that causes cervical cancer – that she got in March 2007, just weeks before her hurdle accident.
As if the anguish over Jenny’s condition weren’t enough, we are now inviting added trouble. As you might imagine, merely suggesting a link between a vaccination and subsequent illness polarizes people into feuding camps. So, we hasten to add that we are not anti-vaccine zealots (would we have been so quick to give Jenny a new vaccine if we were?). As professors who use statistics in our everyday research, we know that correlation does not mean causation. We agree that cost-benefit ratios generally favor vaccines. Jenny might be an isolated case in a capricious universe.
But we also see the other side. Jenny could be the tip of a growing cluster of grimly similar cases thus far invisible to regulatory watchdogs. That is why we reported Jenny’s case in spring 2008 to the Vaccine Adverse Event Reporting System (VAERS), the federal database for monitoring adverse events. And that is why we have tried repeatedly—and unsuccessfully—to persuade the Center for Disease Control (CDC) to investigate how many Jennys are out there. Thus far, the CDC insists that Jenny is just an isolated statistical blip. They might be right. But wouldn’t it be important to confirm that hunch?
Remarkably, the CDC drew confident conclusions before it had conducted a rigorous study. It limited its search to the VAERS database—even though its shortcomings are well known to insiders. For one thing, it is a voluntary reporting system that almost certainly undercounts adverse events. Many doctors have even never heard of it. And the rest are busy people who are wary of vaccine kooks. Second, VAERS data are also poorly organized, notably, the reporting form does not even offer an entry for diagnosis.
Finally, the accuracy of VAERS data is questionable. It is the rare entry that says “further information requested”; most entries contain no follow-up information on what happened to the patient including whether she lived or died. It is unclear who, if anyone, is tracking the adverse events and sorting cases into similar clusters. And it is impossible to compute how many of all the vaccinated girls are now ill if the government refuses to reveal how many vaccinations in each lot number were administered (such information is proprietary!).
The CDC does not inspire confidence, so we conducted our own shoestring search to determine whether Jenny was alone. We created a website (jenjensfamilyblogspot.com). Although this website has only drawn 40,000 visitors, it has out-performed the federal government in finding girls ominously similar to Jenny (current score is: Jenny site 2; CDC’s VAERS: 0).
One does not need to be a statistician to see how unlikely it is that these two other girls are the only cases out there—or how frightening it is that we already know of three documented cases of girls (those two plus Jenny) who developed ALS within several months after their vaccinations. After all, if the odds of ALS in teenaged girls are 1 in 3 million and we found 3 in only 40,000, it is very possible that many other of the 6 million girls vaccinated have already developed severe neurological collapse, like Jenny.
Surely, one not need to be a conspiracy theorist to ask: How many catastrophic 1-in-3 million events, all within months of Gardasil vaccinations, will it take to get the CDC to launch a major investigation of possible causal connections?
Vaccination, like national defense, is a public good. Society asks citizens to make small sacrifices for our collective safety. Occasionally, some pay a horrific price. As in war, we should honor the fallen, including those fallen to friendly fire. But, by accident or design, our government has made it unduly difficult to identify the fallen in the war against infectious diseases. Without good data, we cannot have a serious policy debate—and we will never know how many Jennys are out there.
Author Note: Barbara Mellers and Philip Tetlock, the parents of Jenny Tetlock, are professors at the University of California - Berkeley. Barbara Shapiro, M.D., Ph.D. is an associate professor of neurology at Case Western University.
On a sunny afternoon in May 2007, a tearful Jenny told her mother how her seventh-grade gym class laughed when she tripped on a hurdle that everyone else cleared easily. A few weeks later came the odd limp. Gradually, weakness spread; her muscles atrophied; her world shrank.
Jenny’s parents frantically rushed her to an ever wider range of specialists, to no avail. By spring 2008, Jenny was a quadriplegic who could breathe only with machine support. She clung to life for almost a year but she never made it to see another spring.
No one knows exactly when Jenny’s disease began—or what disease she had. World-class neurologists suspect Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS). This relentless killer spares the mind, while methodically destroying the body’s motor neurons until the patient body slips into total, irreversible paralysis.
Yet medical opinion is not unanimous. The CDC estimates the odds of ALS among teenage girls at 1 in 3 million, less than those of being struck by lightning. A far more common cause of paralysis among teenage girls is autoimmune disease.
This is why world-class immunologists suspect that Jenny had a potentially treatable autoimmune disorder mimicking ALS, possibly triggered by the Gardasil vaccination – for protection against the virus that causes cervical cancer – that she got in March 2007, just weeks before her hurdle accident.
As if the anguish over Jenny’s condition weren’t enough, we are now inviting added trouble. As you might imagine, merely suggesting a link between a vaccination and subsequent illness polarizes people into feuding camps. So, we hasten to add that we are not anti-vaccine zealots (would we have been so quick to give Jenny a new vaccine if we were?). As professors who use statistics in our everyday research, we know that correlation does not mean causation. We agree that cost-benefit ratios generally favor vaccines. Jenny might be an isolated case in a capricious universe.
But we also see the other side. Jenny could be the tip of a growing cluster of grimly similar cases thus far invisible to regulatory watchdogs. That is why we reported Jenny’s case in spring 2008 to the Vaccine Adverse Event Reporting System (VAERS), the federal database for monitoring adverse events. And that is why we have tried repeatedly—and unsuccessfully—to persuade the Center for Disease Control (CDC) to investigate how many Jennys are out there. Thus far, the CDC insists that Jenny is just an isolated statistical blip. They might be right. But wouldn’t it be important to confirm that hunch?
Remarkably, the CDC drew confident conclusions before it had conducted a rigorous study. It limited its search to the VAERS database—even though its shortcomings are well known to insiders. For one thing, it is a voluntary reporting system that almost certainly undercounts adverse events. Many doctors have even never heard of it. And the rest are busy people who are wary of vaccine kooks. Second, VAERS data are also poorly organized, notably, the reporting form does not even offer an entry for diagnosis.
Finally, the accuracy of VAERS data is questionable. It is the rare entry that says “further information requested”; most entries contain no follow-up information on what happened to the patient including whether she lived or died. It is unclear who, if anyone, is tracking the adverse events and sorting cases into similar clusters. And it is impossible to compute how many of all the vaccinated girls are now ill if the government refuses to reveal how many vaccinations in each lot number were administered (such information is proprietary!).
The CDC does not inspire confidence, so we conducted our own shoestring search to determine whether Jenny was alone. We created a website (jenjensfamilyblogspot.com). Although this website has only drawn 40,000 visitors, it has out-performed the federal government in finding girls ominously similar to Jenny (current score is: Jenny site 2; CDC’s VAERS: 0).
One does not need to be a statistician to see how unlikely it is that these two other girls are the only cases out there—or how frightening it is that we already know of three documented cases of girls (those two plus Jenny) who developed ALS within several months after their vaccinations. After all, if the odds of ALS in teenaged girls are 1 in 3 million and we found 3 in only 40,000, it is very possible that many other of the 6 million girls vaccinated have already developed severe neurological collapse, like Jenny.
Surely, one not need to be a conspiracy theorist to ask: How many catastrophic 1-in-3 million events, all within months of Gardasil vaccinations, will it take to get the CDC to launch a major investigation of possible causal connections?
Vaccination, like national defense, is a public good. Society asks citizens to make small sacrifices for our collective safety. Occasionally, some pay a horrific price. As in war, we should honor the fallen, including those fallen to friendly fire. But, by accident or design, our government has made it unduly difficult to identify the fallen in the war against infectious diseases. Without good data, we cannot have a serious policy debate—and we will never know how many Jennys are out there.
Author Note: Barbara Mellers and Philip Tetlock, the parents of Jenny Tetlock, are professors at the University of California - Berkeley. Barbara Shapiro, M.D., Ph.D. is an associate professor of neurology at Case Western University.
Wednesday, April 8, 2009
Tributes in Poem
Two "friends of Jenny" who worked hard to save her life have written poems to commemorate that life. We wanted to share them with you:
Jenny
Fly away Jenny
But don’t fly too far.
Fly to a place
Where you run, laugh, and play
The way you always were -
Unencumbered.
Be the free spirit that you are
The bravest heart
The gentlest soul
The most impish smile.
Fly away Jenny
But stay close to us.
We will never forget you.
The sun is meant to shine for all the day,
from dawn until a distant setting sun -
from careless days of play and precious fun
that pass so quick, yet in our mem'ries stay
The brightness of the morning warms our hearts,
and as the midday heat begins to rise
we look ahead with dreams behind our eyes
and plan our lives based on the ancient charts.
But rarely, will the moon eclipse our star,
and darkness seems to end the day too soon,
so all that's left's a name carved as a rune
invoking recollections time can't mar -
so in the light that follows the eclipse
the stories from before stay our lips.
Thank you, Barbara and Travis, for your lovely words.
Jenny
Fly away Jenny
But don’t fly too far.
Fly to a place
Where you run, laugh, and play
The way you always were -
Unencumbered.
Be the free spirit that you are
The bravest heart
The gentlest soul
The most impish smile.
Fly away Jenny
But stay close to us.
We will never forget you.
The sun is meant to shine for all the day,
from dawn until a distant setting sun -
from careless days of play and precious fun
that pass so quick, yet in our mem'ries stay
The brightness of the morning warms our hearts,
and as the midday heat begins to rise
we look ahead with dreams behind our eyes
and plan our lives based on the ancient charts.
But rarely, will the moon eclipse our star,
and darkness seems to end the day too soon,
so all that's left's a name carved as a rune
invoking recollections time can't mar -
so in the light that follows the eclipse
the stories from before stay our lips.
Thank you, Barbara and Travis, for your lovely words.
Tuesday, March 31, 2009
Jenny Video
A video celebrating Jenny's life was played at her memorial service. To download a copy for personal viewing, click here:
http://www.sendspace.com/file/j44a60
PLEASE NOTE: This video is for personal viewing only; do not repost or use for any other purpose.
http://www.sendspace.com/file/j44a60
PLEASE NOTE: This video is for personal viewing only; do not repost or use for any other purpose.
Tuesday, March 17, 2009
In Memory of Jenny
Jenny Tetlock passed away on Sunday, March 15th, from a debilitating form of motor neuron disease. Her life was cut short after a courageous struggle that lasted for more than a year. She left behind her brother, Paul, her mother, Barbara, and her father, Philip. A memorial service will be held in her honor on Saturday, March 28th, at 12:30 pm at the Lafayette Orinda Presbyterian Church followed by a lunch reception. All are welcome. UPDATE: We expect to have enough space to accommodate everyone who wants to attend, but would still appreciate it if you would RSVP to admin@jentet.com so that we know how many to expect.
Jenny often said that she wished the Kensington library had more to offer. In lieu of flowers, please send donations to Friends of the Kensington Library, 61 Arlington Avenue, Kensington, CA 94707. Checks should be payable to Friends of the Kensington Library, with a note on the check or in the accompanying envelope indicating that the donation is “In memory of Jenny Tetlock”.
Jenny often said that she wished the Kensington library had more to offer. In lieu of flowers, please send donations to Friends of the Kensington Library, 61 Arlington Avenue, Kensington, CA 94707. Checks should be payable to Friends of the Kensington Library, with a note on the check or in the accompanying envelope indicating that the donation is “In memory of Jenny Tetlock”.
Monday, March 16, 2009
Final Rest
Our beloved Jenny died yesterday afternoon, holding her parents' hands, surrounded by love.
Saturday, March 14, 2009
OneClick to Save Jenny
As readers of this blog know, Jenny is 15 years old. Two years ago, she was a normal, seemingly healthy girl. Today, she is a quadriplegic who cannot breathe on her own for more than a few seconds.
Despite over a year of intensive testing at several of the country’s top medical centers, doctors still aren’t sure what has caused Jenny’s paralysis. Some (mostly neurologists) believe that she has an unusual, rapidly progressive form of juvenile ALS – the same disease that confines Stephen Hawking to a wheelchair. Others (mostly immunologists) think she may have a rare autoimmune disease that mimics ALS.
Jenny’s first symptoms occurred not long after she received the last of three HPV vaccinations (Gardasil). Her family hesitates to declare Gardasil the cause of her illness without scientific evidence, but some MDs at top hospitals see the connection as possible and even plausible.
Thousands of vaccine recipients worldwide have reported adverse reactions to Gardasil. But their reports are largely anecdotal, and their reactions have not been confirmed as being caused by the vaccine.
The official US repository for data about adverse reactions to vaccines is the Vaccine Adverse Event Reporting System (VAERS) database. Our concerns focus on the inadequacies of the VAERS database.
Visitors to this blog (which has been visited by almost 30,000 people) have informed us of two other verified US cases of ALS following the Gardasil vaccination – cases that had not been reported to the federal system until we urged the families to do so. To put this in perspective, some at the Center for Disease Control (CDC) estimate that ALS would be expected to occur only once in every 1.6 million teenage girls. About 16 million doses of HPV have been given to young girls. Assuming that each girl receives 3 doses (some might receive fewer), this would suggest approximately 5 million young girls have received the HPV vaccine. Of 5 million girls, we would predict 3 cases of juvenile ALS. However, we already know of 3 definite cases of ALS in these young girls, just through Jenny’s website, and we know of 2 other possible cases through other sources. If this is correct, Jenny could be the tip of a small iceberg of tragically similar, but underreported-to-VAERS, cases. This is why we need to fix VAERS, and we need to fix it now, so that we can track adverse events to vaccines more efficiently and more quickly.
Jenny’s medical condition continues to deteriorate (see www.jentet.com for a summary of her case history). To save her life, Jenny needs a miracle ... the kind that only modern information technology – and the good will of everyone who reads this blog or sees her video – can possibly provide.
You can help Jenny – and other girls like her – by signing the VAERS petition. Please go to http://www.thepetitionsite.com/1/oneclickonelife to sign.
Despite over a year of intensive testing at several of the country’s top medical centers, doctors still aren’t sure what has caused Jenny’s paralysis. Some (mostly neurologists) believe that she has an unusual, rapidly progressive form of juvenile ALS – the same disease that confines Stephen Hawking to a wheelchair. Others (mostly immunologists) think she may have a rare autoimmune disease that mimics ALS.
Jenny’s first symptoms occurred not long after she received the last of three HPV vaccinations (Gardasil). Her family hesitates to declare Gardasil the cause of her illness without scientific evidence, but some MDs at top hospitals see the connection as possible and even plausible.
Thousands of vaccine recipients worldwide have reported adverse reactions to Gardasil. But their reports are largely anecdotal, and their reactions have not been confirmed as being caused by the vaccine.
The official US repository for data about adverse reactions to vaccines is the Vaccine Adverse Event Reporting System (VAERS) database. Our concerns focus on the inadequacies of the VAERS database.
Visitors to this blog (which has been visited by almost 30,000 people) have informed us of two other verified US cases of ALS following the Gardasil vaccination – cases that had not been reported to the federal system until we urged the families to do so. To put this in perspective, some at the Center for Disease Control (CDC) estimate that ALS would be expected to occur only once in every 1.6 million teenage girls. About 16 million doses of HPV have been given to young girls. Assuming that each girl receives 3 doses (some might receive fewer), this would suggest approximately 5 million young girls have received the HPV vaccine. Of 5 million girls, we would predict 3 cases of juvenile ALS. However, we already know of 3 definite cases of ALS in these young girls, just through Jenny’s website, and we know of 2 other possible cases through other sources. If this is correct, Jenny could be the tip of a small iceberg of tragically similar, but underreported-to-VAERS, cases. This is why we need to fix VAERS, and we need to fix it now, so that we can track adverse events to vaccines more efficiently and more quickly.
Jenny’s medical condition continues to deteriorate (see www.jentet.com for a summary of her case history). To save her life, Jenny needs a miracle ... the kind that only modern information technology – and the good will of everyone who reads this blog or sees her video – can possibly provide.
You can help Jenny – and other girls like her – by signing the VAERS petition. Please go to http://www.thepetitionsite.com/1/oneclickonelife to sign.
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