Monday, March 28, 2011
A society which respects civil liberty realizes that the freedom of its people is built in large part, upon its privacy. —John Fitzgerald Kennedy
Massachusetts is known for being the birthplace of America, and location of the Revolutionary War. Seems we started another revolution this week. The Forum on Genetic Equity is pushing to pass a MASSACHUSETTS GENETIC BILL OF RIGHTS— a bill to protect information about our genetic make-up, and defects. Think about it: what could employers, insurance companies and others do if they knew about your genetic make-up?
Genetic discrimination could be a true threat to personal freedom and life choices. Databases of genetic information are being compiled daily with few rules to guide their use. The same is true for genetic material; this information could be used to discriminate against people based upon their genetic make-up.
From The Forum on Genetic Equity website: "This legislation marks a major change in the way we think about genetic discrimination. When passed, this legislation will put individuals in control of their genetic material and information."
And this: "The state action in Massachusetts is credited with being a major factor creating the political environment which made it possible for Congress to enact the Genetic Information Nondiscrimination Act (GINA) in 2008. While GINA is considered by many to have been the single most important civil rights legislation adopted in this new century and makes it illegal to use a person’s genetic information or genetic material as the basis to deny anyone health insurance coverage or employment, technological advances have outstripped both federal and state protections. The MASSACHUSETTS GENETIC BILL OF RIGHTS deepens and broadens individual rights by proactively working to end all forms of genetic profiling while safeguarding individual privacy rights."
Steve May, executive director, wrote just today, "The response to our last message about the Massachusetts Genetic Bill of Rights has been nothing short of unbelievable. Over the last 72 hours our mailing list has nearly doubled. The public is clearly gaining a sense that the misuse of genetic data is an emerging civil rights concern."
We respect privacy here at LA Kelley Communications. In fact, there was no HemaBlog yesterday as our website was down for a bit, because we've invested in new privacy mechanisms, to protect you when you contact us, browse us or place an order. Privacy is a huge issue. Ensure you know how to protect yours. Check out the website www.GeneticEquity.org today!
Sunday, March 20, 2011
At 19,340 feet, Kilimanjaro is the highest mountain on the African continent and the largest freestanding mountain in the world. And guess what? I am going there in August! I'm actually going to hike it and attempt the summit. Why? Not just because it's there, but as a fundraiser for Save One Life.
Save One Life is a child sponsorship program for children with blood disorders in developing countries. I founded this 10 years ago to help the poor I saw during my trips overseas. We now have 750 children and adults with hemophilia enrolled, and we hope to add many more! Remember, of the estimated 400,000 with hemophilia in the world, 75% have little or no access to factor. They need our help. And we have a way to help them.
The climb is the brainchild of Eric Hill, president of BioRx, a homecare company, and a sponsor of two kids with hemophilia. Last year he, an employee, and a person with hemophilia, Jeff Salantai, climbed Mt. Rainier. That was a highly technical climb, meaning they had equipment, ropes and crampons. Thankfully, Kilimanjaro is not a technical climb, but it's no walk in the park! With a team of ten, we will trek for 4 days, hopefully summit on the 5th, and then come all the way downhill in one long day.
Would you like to help us?
See who is climbing with me! And consider making a donation. Note that climbers underwrite their own travel expenses: so 100% of your contribution will go toward Save One Life's core services and Africa programs. Please be sure to email us to let us know who you are sponsoring!
Asante Sana (thank you)!
Jungle Photos (www.junglephotos.com)
Great Book I Just Read
Home of the Blizzard by Douglas Mawson
In December of 1911, Douglas Mawson, an Australian geologist, set out Antarctica to explore a 2000 mile long coastline to gather scientific data and search for the magnetic pole. What happened is one of the greatest survival stories of all times. When one companion falls to his death in a crevice, and takes most of the supplies with him on his sledge, Mawson and his remaining companion struggle on. They only had six dogs and one sled with enough food for ten days. Their struggle to survive is surreal; the dogs are reduced to eating the leather straps on the sledges, or even the hair from the reindeer sleeping bags. One by one, the men eat the dogs to survive. And it's this that led to the demise of Mertz, who becomes delirious and dies. Vitamin A poisoning from dog liver is suspected, but not in this book, as there was no word even for vitamin then!
Alone, Mawson heroically staggers back in blinding katabolic winds, and temperatures of 40 below. How he survived is beyond belief and makes for a gripping read. Mawson is a professor and geologist, and the book is old, so expect some stilted writing and highly technical explanations. But Mawson is one of exploration's greats and this is a classic. Four stars.
Sunday, March 13, 2011
Just last week I blogged about CSL Behring's new factor XIII concentrate Corifact. Now I've learned that Novo Nordisk announced that a Biologic License Application (BLA) has been submitted to the US Food and Drug Administration (FDA) requesting the approval of a recombinant factor XIII compound for those with congenital Factor XIII (FXIII) deficiency.
Corifact is made from human blood plasma. This new drug is made from recombinant technology, which uses genetic engineering.
Factor XIII deficiency has a prevalence of one case per two million people, with an estimated 600 diagnosed patients worldwide, making it one of the rarest bleeding disorders.
A press release from Novo Nordisk states: "Positive results from a phase III trial examining the efficacy and safety of recombinant factor XIII for the prevention of bleeds associated with congenital FXIII deficiency showed that when compared to a historic control group of individuals who did not receive routine FXIII infusions, preventive treatment with monthly recombinant FXIII injections significantly decreased the number of bleeding episodes requiring treatment. These data were presented at the American Society of Haematology (ASH) meeting in December 2010, and marked the first completed phase III study conducted to study the use of a recombinant FXIII treatment to prevent bleeding episodes in congenital FXIII deficiency patients."
It's all great news for those who have factor XIII deficiency, and with the sad news from around the world, especially Japan, we need good news.
Good Book I Just Read
No One Here Gets Out Alive
Jerry Hopkins and Danny Sugerman
I’m continuing my reading streak on The Doors, the 1960s band that took America by storm. In this book, Jerry Hopkins (Rolling Stone) and Danny Sugerman (then teen office boy for Doors) profile the madness and magnificence of Jim Morrison, front man and silky-voice singer, whose depravity and self-destruction eventually upstaged the music itself and his three talented band members. The book details Morrison’s schizophrenic adolescence in which he, with an IQ of 150, devoured sophisticated philosophy and poetry books, and wrote poetry himself, but yet immaturely and cruelly harassed his younger brother, scared the elderly and openly mocked cripples. The first few chapters alone might end any hero worship of The Lizard King. The book recounts chronologically how the Doors formed, their skyrocketing rise to fame, and the toll of fame on the unstable Morrison. They were only 21-23 years old, in a music industry and culture awash in drugs, but why did only Morrison succumb to the pressure? The book is insightful into the music industry of the 1960s. It’s incomplete in that no other character is truly explored: Manzarek, Densmore and Krieger are barely mentioned. They were together for six intense years: how did they cope with Morrison’s descent into madness? The book also sheds little insight into Morrison’s state of mind, or why he acts as he does other than the drugs or alcohol, but factually states a portrait of a seeming sociopath: the dozens of paternity suits, his wanting his child to be aborted because he simply didn’t want one, his cruelty to his mother when he performed, his promiscuity and debauchery.
It’s hard to reconcile the deep thinker with the raging drunk. Perhaps the book doesn’t go deep enough into Morrison’s psyche, but then, Morrison didn’t seem to let anyone in. He internalizes his pain, which seeps out in frightening rages, and then is dampened by alcohol. One only needs to look at his photo progression in just six years: from sleek, sexy rock star to bloated, bearded drunk. I don't think the pain was from being a frustrated poet or even a rock star; that's putting the cart before the horse. His pain was chronic, malignant. Poetry was one expression; rage and cruelty was another. Adoration from the masses was one treatment; alcohol, maybe heroin, was another, and became the final exit.
Morrison helped put the Doors on the map, and he destroyed the Doors by destroying himself. Forty years later, it seems we will never know what drove Morrison to the edge, and then over. The authors skim over any analysis by comparing his angst to being like the Greek god Dionysus, or part of the Beat generation, or expressing himself like the Indian shamans he revered. But this is shallow. Looking back today, Morrison was an emotionally disturbed artist who sought to medicate his pain through alcohol, and expressed himself through rage. Incredibly, he left a legacy of beautiful, mystical music that captured a unique time in America, and the black hole of his inner life. And we are drawn to such people, scared of them, and yet worship them. Despite the incomplete picture the book paints, it was a great read and I could not put it down. Three stars.
Friday, March 04, 2011
When is the number 13 lucky?
We now have a factor concentrate for people with factor XIII deficiency. CSL Behring, makers of Helixate FS, Monoclate P and Mononine, was granted FDA approval for their factor XIII concentrate Corifact, indicated to treat congenital factor XIII deficiency. This is the first and only U.S. approved treatment for factor XIII-deficiency and the fourth new product that CSL Behring has brought to the U.S. market in the past two years. Corifact is already available for use in 12 countries throughout the world under the trade name Fibrogammin- P.
Factor XIII deficiency, also known as fibrin-stabilizing factor deficiency, is rare, affecting one in two million, with an incidence in the U.S. of approximately 150 people.
Symptoms include bleeding from the umbilical cord after birth, poor wound healing, miscarriages, subcutaneous bleeding, and excessive bleeding in joints and muscles following trauma. Patients lacking the FXIII protein are also at high-risk for intracranial hemorrhage (ICH), bleeding inside the skull that can be life threatening. Studies have shown that between 25- 60% of factor XIII deficient patients will experience an ICH at least once during their lifetime.
This is great news for those suffering with factor XIII deficiency. For more information, please see www.corifact.com and contact your HTC staff.
Great Book I Just Read
Riders on the Storm by John Densmore
“There’s the Beatles, the Stones, and the Doors,” says Paul Rothschild, producer of one of the greatest bands of the sixties. Drummer John Densmore was only 21 when he joined with three other California students to form a band that would soon skyrocket to the top at a time when the US was a nation at war in Vietnam, and with itself. With quiet Robby Krieger on guitar, methodical and rational Ray Manzarek on keyboard and Adonis-look-a-like singer Jim Morrison, the band was like no other. With no bass player, they combined blues, jazz and psychedelic rock, with some Indian strings and often very dark lyrics, about death, murder and rage. And no wonder: Not long after forming, Densmore writes about their iconic lead singer, “I’m in a band with a psychotic.”
The book is captivating. It starts in Paris, 1975, with Densmore visiting Morrison’s grave, four years after his death at age 27 on July 3, 1971 from an overdose. Returning to the hotel, he pours his feelings out in a "letter" to Morrison on the hotel stationery, which then gets interspersed throughout the book with his recollections. His memoir details his time in the band, returning now and then to the ongoing letter, and towards the end, “updates” Morrison on events of the 1980s and 1990s. Interspersed are appropriate lyrics from their songs, so that the book itself becomes quite artsy. The book gives excellent insight into what the 60s were like, what it’s like being in a band on the rise and what it was like to survive the onslaught of Jim Morrison. What’s missing, though, is what “The Lizard King” was really like. We get snapshots, snippets, and stories, but it’s as if Densmore viewed Morrison at arm’s length, even though he intensely shared six years with him. He was in awe of Morrison—who wasn’t?—and scared of him, and rightly so. Though he feels guilty at not being able to help Morrison, we have to remember he was only a young man from a humble Catholic background, ill equipped to cope with sudden stardom, wealth and the phenomenally complex, creative and self-destructive Morrison.
As if to highlight the detachment Densmore had with Morrison, Densmore dedicates the book to John Lennon of the Beatles, one of Densmore’s heroes, and also mentions Lennon’s assassination in his “letter” to Morrison, yet doesn’t mention or maybe doesn’t even know that Lennon was assassinated on Morrison’s birthday, a fact he should know as Morrison and Densmore were born only a week apart.
“We sensed rage and a possible explosion too near the surface to mess with in dealing with you," Densmore writes in his letter to the now dead Morrison. "It seemed to have a lid on it—Pandora’s box with all the demons that wanted to be released. We never opened the box… we had to deal with your demons seeping out the side.” They seeped out and poisoned everything; the Doors had to cancel a 20-city tour when Morrison was arrested in Miami for indecent exposure at a concert (he was just pardoned this past December!). The charisma, lyrics and stunning voice of Morrison helped make the Doors a success; his addiction, rage and irresponsibility destroyed them. The book was published in 1990 and Densmore writes, “Well, we’re going on 20 years and there’s no end in sight” of the fascination people have with the Doors. On July 3, it will be 40 years since Morrison’s death, and the Doors are almost as popular as ever. I picked this book up and finished it 5 hours later—it’s compelling, honest, shocking and eye opening. A great book about one of my favorite bands and my favorite singer—for no one could sing like Jim Morrison. Three stars.
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