Wednesday, December 26, 2007
Tuesday, December 18, 2007
I bet she doesn't have a Che t-shirt
Elsa Murano will become Texas A&M's new president in January. It's an amazing and inspiring story of a woman who as a girl with her family, fled Castro's Cuba in 1961 and later came to the United States at the age of 14 not knowing any English. Murano pursued microbiology, food science and technology studies earning a masters and doctorate degrees. In 2001 she was appointed undersecretary for food safety at the Department of Agriculture and is now poised to fill the chief executive slot of a major university.Dr. Murano is profiled in the Houston Chronicle here, the Dallas Morning News here, the Austin American Statesman here.
Monday, December 17, 2007
Study shows extended half-life of recombinant FVIIa feasible
A study by CSL Behring shows that the half life of rFVIIa can be prolonged by fusing it with human albumin.
Greater half life of rFVIIa would be welcome news indeed. Bottom-line, NovoSeven is expensive. We're glad to have it don't get me wrong. When dealing with inhibitors being able to treat bleeds with a recombinant product is extremely valuable. But it is costly.
When Jack was around 13 months he developed an inhibitor. This was in the middle of the factor shortage for recombinant FVIII (rFVIII) products. Because of the shortage immune tolerance (IT) was delayed for over a year. During which time we treated bleeds on-demand with NovoSeven. We used Novo to treat bleeds for an additional year during IT until it was successful and rFVIII once again had some meaningful efficacy.
For 2 1/2 years we used NovoSeven to treat bleeds from when Jack was around 13 months to 3 1/2 years-old. By the time Jack was four we came very close to the $2 million lifetime cap on the PPO insurance option through my work (and this was with a 5-month period before IT started during which Jack did not have a bleeding episode). Not all of that expense could be attributed to rFVIIa but certainly the lion's share.
Had we had a longer lasting rFVIIa that hit toward the lifetime cap would have been much less. Treating some bleeds every 2-3 hours for 24-36 hours to keep on top of the bleed just ate up a huge amount of insurance. (We've been very fortunate to have a HMO option with no lifetime cap, less choice - but no cap)
So I think there's definitely room for optimism. Noted in some of my previous posts here, here, here, here and here there's a lot of activity in the anti-hemophilic industry. And this is good. Market forces at work. Competition fueling innovation which produces better products and therapies for our community.
CSL Behring today announced the results of a pre-clinical study that show for the first time it is feasible to genetically fuse Factor VIIa (FVIIa) to human albumin, prolonging the half- life of this therapeutic protein while retaining its biologic activity. In the study, which was presented at the American Society of Hematology 49th Annual Meeting and Exposition, the half-life of recombinant VIIa-albumin fusion protein (rVIIa-FP) was shown to be extended 6-to-9 fold (emphasis mine) compared to wild type rFVIIa.
Greater half life of rFVIIa would be welcome news indeed. Bottom-line, NovoSeven is expensive. We're glad to have it don't get me wrong. When dealing with inhibitors being able to treat bleeds with a recombinant product is extremely valuable. But it is costly.
When Jack was around 13 months he developed an inhibitor. This was in the middle of the factor shortage for recombinant FVIII (rFVIII) products. Because of the shortage immune tolerance (IT) was delayed for over a year. During which time we treated bleeds on-demand with NovoSeven. We used Novo to treat bleeds for an additional year during IT until it was successful and rFVIII once again had some meaningful efficacy.
For 2 1/2 years we used NovoSeven to treat bleeds from when Jack was around 13 months to 3 1/2 years-old. By the time Jack was four we came very close to the $2 million lifetime cap on the PPO insurance option through my work (and this was with a 5-month period before IT started during which Jack did not have a bleeding episode). Not all of that expense could be attributed to rFVIIa but certainly the lion's share.
Had we had a longer lasting rFVIIa that hit toward the lifetime cap would have been much less. Treating some bleeds every 2-3 hours for 24-36 hours to keep on top of the bleed just ate up a huge amount of insurance. (We've been very fortunate to have a HMO option with no lifetime cap, less choice - but no cap)
So I think there's definitely room for optimism. Noted in some of my previous posts here, here, here, here and here there's a lot of activity in the anti-hemophilic industry. And this is good. Market forces at work. Competition fueling innovation which produces better products and therapies for our community.
Wednesday, December 12, 2007
Surge success causes MRAP slowdown
There's been a whole rash of articles basically saying the same thing. Things are better in theater in Iraq so maybe we don't need all those MRAP's after all.
Like this quote from an MRAP article on Weekly Standard's online site.
Reading through these articles I notice we get to hear from the big brass now. Before it was the one or two star general run out to take the fire from the press and congress. Both of which were eager to criticize the administration and the war effort but still wanting to appear pro-military by calling for immediate and miraculous production to MRAP's to protect our war fighters. Not exactly a very friendly environment. As with any organization when the news is bad or you expect to take some heat, send out the spokesperson or lower level management. But now that there are reasons for optimism in Iraq we hear from Marine Commandant Gen. James Conway and Army Lt. Gen. Raymond Odierno, the number two commander in Iraq.
In the end fewer MRAP's will be produced but for now the manufacturers are still going full-tilt to field as many of these life-saving vehicles as they can. The front-line folks want them because they save lives.
Here's a recent article from USA Today about the positive effect the MRAP's are having in Iraq.
Like this quote from an MRAP article on Weekly Standard's online site.
But since arguments against the surge are harder to come by these days, the services are taking the first steps in slowing the MRAP freight train. Late last month, the Marine Corps announced it would cut 1,300 vehicles from its order, saving the Pentagon $1.7 billion and removing the logistical headache of moving the weighty vehicles to the field and trying to find something to do with them.
Reading through these articles I notice we get to hear from the big brass now. Before it was the one or two star general run out to take the fire from the press and congress. Both of which were eager to criticize the administration and the war effort but still wanting to appear pro-military by calling for immediate and miraculous production to MRAP's to protect our war fighters. Not exactly a very friendly environment. As with any organization when the news is bad or you expect to take some heat, send out the spokesperson or lower level management. But now that there are reasons for optimism in Iraq we hear from Marine Commandant Gen. James Conway and Army Lt. Gen. Raymond Odierno, the number two commander in Iraq.
In the end fewer MRAP's will be produced but for now the manufacturers are still going full-tilt to field as many of these life-saving vehicles as they can. The front-line folks want them because they save lives.
Here's a recent article from USA Today about the positive effect the MRAP's are having in Iraq.
Sunday, December 9, 2007
Mice cured of sickle cell anemia with stem cells
More stem cell breakthroughs without the need for embryonic stem cells. Life preserved. Win - win.
and
The strategy should work to treat hemophilia, thalassemia and severe combined
immunodeficiency disease, the "bubble boy" disease, according to researchers, and might also apply to disorders linked a single gene, such as muscular dystrophy and cystic fibrosis.
and
The study is the latest in a string of significant experiments published in the past five months involving a new approach of reprogramming adult cells so they are capable of growing into any type of tissue in the body. (emphasis mine)
Friday, December 7, 2007
Thursday, December 6, 2007
Masterful
Former Massachusetts Governor and Republican presidential hopeful Mitt Romney addressed the issue of his Mormon religion and his bid for the Presidency today from College Station, Texas. Speaking from the George H. W. Bush Presidential Library on the West Campus of Texas A&M University Gov. Romney affirmed his Mormon religion but pledged that his church would not define his candidacy or his presidency
Romney didn’t wade into the tall grass of particulars of his religion nor should he have to. But rather, he engaged the nation in a discussion of religious liberty and tolerance that is embedded in the American tradition by the founding fathers.
Excerpts from the speech:
and
and
It was well crafted, well delivered and completely unnecessary. Romney succumbed to the rantings and ravings of his detractors calling for an explanation of his faith. Now that he has addressed the issue on very much his own terms, and done so quite masterfully, they will only use it to further bludgeon him with their vicious and bigoted attacks.
Those people will never be swayed by any one speech (however eloquent it may be). But for those many who were unsure what to think of Romney and his faith this speech should quell their fears and comfort their apprehensions. For here is a man of faith, conviction and integrity who will hold true to the founding principles of this nation’s forefathers and the Constitution they crafted which guides it.
The whole text of the speech can be found here.
Video of the speech here.
Romney didn’t wade into the tall grass of particulars of his religion nor should he have to. But rather, he engaged the nation in a discussion of religious liberty and tolerance that is embedded in the American tradition by the founding fathers.
Excerpts from the speech:
"Let me assure you that no authorities of my church, or of any other church for that matter, will ever exert influence on presidential decisions. Their authority is theirs, within the province of church affairs, and it ends where the affairs of the nation begin.”
and
"There are some who would have a presidential candidate describe and explain his
church's distinctive doctrines. To do so would enable the very religious test the founders prohibited in the Constitution. No candidate should become the spokesman for his faith. For if he becomes President he will need the prayers of the people of all faiths.”
"I believe that every faith I have encountered draws its adherents closer to God. And in every faith I have come to know, there are features I wish were in my own: I love the profound ceremony of the Catholic Mass, the approachability of God in the prayers of the Evangelicals, the tenderness of spirit among the Pentecostals, the confident independence of the Lutherans, the ancient traditions of the Jews, unchanged through the ages, and the commitment to frequent prayer of the Muslims. As I travel across the country and see our towns and cities, I am always moved by the many houses of worship with their steeples, all pointing to heaven, reminding us of the source of life's blessings.”
and
"Americans acknowledge that liberty is a gift of God, not an indulgence of government. No people in the history of the world have sacrificed as much for liberty. The lives of hundreds of thousands of America's sons and daughters were laid down during the last century to preserve freedom, for us and for freedom loving people throughout the world. America took nothing from that Century's terrible wars - no land from Germany or Japan or Korea; no treasure; no oath of fealty. America's resolve in the defense of liberty has been tested time and again. It has not been found wanting, nor must it ever be. America must never falter in holding high the banner of freedom.”
It was well crafted, well delivered and completely unnecessary. Romney succumbed to the rantings and ravings of his detractors calling for an explanation of his faith. Now that he has addressed the issue on very much his own terms, and done so quite masterfully, they will only use it to further bludgeon him with their vicious and bigoted attacks.
Those people will never be swayed by any one speech (however eloquent it may be). But for those many who were unsure what to think of Romney and his faith this speech should quell their fears and comfort their apprehensions. For here is a man of faith, conviction and integrity who will hold true to the founding principles of this nation’s forefathers and the Constitution they crafted which guides it.
The whole text of the speech can be found here.
Video of the speech here.
Hemophilia in the News
Massachusetts Company looks to jump into the Antihemophilic Factor game
GTC Biotherapeutics Inc., of Framingham, say it's acquired an exclusive license to develop three recombinant human proteins from ProGenetics LLC of Blacksburg, Va.
GTC has been pioneering the production of therapeutic human proteins from the milk of animals.
From the GTC website:
The company press release is here.
A quick aside: A short blurb in from bizjournals is here. The sentence that caught my eye is this:
Ain't capitalism grand. The sheer optimism necessary to make ventures like this work. And in the end it make not work.
Non-injectable Factor?...
Not yet, but some initial steps.
Nastech Pharmaceutical Company Inc. of Bothell, Wa has entered into a feasibility study with an undisclosed global leader in the production of plasma products to develop a non-injectable Factor IX product.
Who is the "undisclosed global leader in the production of plasma products"? We could certainly make some well-informed guesses. But really, don't know, don't care. Do it and get it done.
GTC Biotherapeutics Inc., of Framingham, say it's acquired an exclusive license to develop three recombinant human proteins from ProGenetics LLC of Blacksburg, Va.
GTC has been pioneering the production of therapeutic human proteins from the milk of animals.
From the GTC website:
The key enabling science for GTC Biotherapeutics (GTC) is the development of human therapeutic proteins in the milk of transgenic animals. Transgenic animals carry genetic information allowing them to express these human therapeutic proteins in their milk. Once they are produced, these recombinant proteins can be efficiently purified from milk for use as therapeutics.
The company press release is here.
A quick aside: A short blurb in from bizjournals is here. The sentence that caught my eye is this:
With 143 workers, GTC reported a 2006 net loss of $35.3 million on revenue of $6.1 million.
Ain't capitalism grand. The sheer optimism necessary to make ventures like this work. And in the end it make not work.
Non-injectable Factor?...
Not yet, but some initial steps.
Nastech Pharmaceutical Company Inc. of Bothell, Wa has entered into a feasibility study with an undisclosed global leader in the production of plasma products to develop a non-injectable Factor IX product.
Who is the "undisclosed global leader in the production of plasma products"? We could certainly make some well-informed guesses. But really, don't know, don't care. Do it and get it done.
Wednesday, November 28, 2007
What I no longer pray for
I wrote some thoughts down a few days ago, but as real life occupies one’s time it’s taken a while to get them on the blog.
Thanksgiving is past and we move into the Christmas season. It’s a time of reflection for many. A time to take stock of the year past and prepare for the year to come. A time to take account of just what one has, and yes, even what one wants.
I have been truly blessed. I was raised in love by two inspiring parents whose example of life, marriage and parenting is the standard to which I aspire.
I am surrounded by the love of my fantastic wife whose smarts and wit keep me grounded and on my toes.
We have two beautiful boys who amaze us constantly with what they know, learn and do.
I am thankful for modern medical science and safe and effective factor concentrates. Thankful for the hemophilia doctors, nurses and social workers who provide Jack with the care and treatment that allows him to do (most) everything he wants.
I am thankful for the healing gift of time. The time to learn, cope, adjust and accept. The time to come to grips with the challenges of life with a boy with hemophilia. The time to take on that monster of fear and beat it down until that monster is a routine that is managed day in and day out.
And so it is that I pray and give thanks for all that I have. But one thing has left my prayers. I no longer pray for a cure for hemophilia. I want it. I want it desperately. More than I want longer lasting factor, easier delivery methods and cheaper factor. And I want those a lot.
But it is through the grace of God and wonders of time and experience that hemophilia is but one of the many challenges of a busy life. One that we address, manage and overcome.
God knows we want a cure and in time it will come. But there’s something to the old adage that God only gives you what you can handle. Until there is a cure hemophilia we can handle and I will pray for other things.
Thanksgiving is past and we move into the Christmas season. It’s a time of reflection for many. A time to take stock of the year past and prepare for the year to come. A time to take account of just what one has, and yes, even what one wants.
I have been truly blessed. I was raised in love by two inspiring parents whose example of life, marriage and parenting is the standard to which I aspire.
I am surrounded by the love of my fantastic wife whose smarts and wit keep me grounded and on my toes.
We have two beautiful boys who amaze us constantly with what they know, learn and do.
I am thankful for modern medical science and safe and effective factor concentrates. Thankful for the hemophilia doctors, nurses and social workers who provide Jack with the care and treatment that allows him to do (most) everything he wants.
I am thankful for the healing gift of time. The time to learn, cope, adjust and accept. The time to come to grips with the challenges of life with a boy with hemophilia. The time to take on that monster of fear and beat it down until that monster is a routine that is managed day in and day out.
And so it is that I pray and give thanks for all that I have. But one thing has left my prayers. I no longer pray for a cure for hemophilia. I want it. I want it desperately. More than I want longer lasting factor, easier delivery methods and cheaper factor. And I want those a lot.
But it is through the grace of God and wonders of time and experience that hemophilia is but one of the many challenges of a busy life. One that we address, manage and overcome.
God knows we want a cure and in time it will come. But there’s something to the old adage that God only gives you what you can handle. Until there is a cure hemophilia we can handle and I will pray for other things.
Saturday, November 24, 2007
Success like this doesn't happen often.
The Aggies pulled out a 38-30 upset over the 13th ranked Texas Longhorns Friday.Perhaps more surprising is the basketball Aggies improving to 6-0 with a 70-47 win over Ohio State and capturing the NIT Season Tip-Off title that same day. This is a program with no pedigree to speak of in the Big 12 and the Southwest Conference before that. A program that was best known for the witticisms of former coach and SWC legend Shelby Metcalf. The coach who once told (as the legend goes) a player with 4 F's and a D that he was focusing too much on one subject.
But under Billy Gillispie and now under Mark Turgeon the Aggie hoopsters remain a Big 12 and national contender.
Oh, and by the way, so long Fran.
Friday, November 16, 2007
New kids on the block want to play
And they’re bringing their own ball.
Inspiration Biopharmaceuticals hopes to get into the recombinant Factor IX (rFIX) game with a new low-cost manufacturing process.
In a November 13, 2007 press release Inspiration Biopharmaceuticals states having a patented manufacturing process that “significantly increase(s) cell-line productivity.” Which, “significantly lowers the overall production cost for Factor products compared with existing manufacturing processes.”
Inspiration Biopharmaceuticals hopes its cost-effective process will open the door to non-invasive delivery methods and eventually to a therapeutic cure for hemophilia B.
Cheaper, better, easier. All desireable. But first and foremost; safety, safety, safety.
Read the press release here.
Inspiration Biopharmaceuticals hopes to get into the recombinant Factor IX (rFIX) game with a new low-cost manufacturing process.
In a November 13, 2007 press release Inspiration Biopharmaceuticals states having a patented manufacturing process that “significantly increase(s) cell-line productivity.” Which, “significantly lowers the overall production cost for Factor products compared with existing manufacturing processes.”
Inspiration Biopharmaceuticals hopes its cost-effective process will open the door to non-invasive delivery methods and eventually to a therapeutic cure for hemophilia B.
Cheaper, better, easier. All desireable. But first and foremost; safety, safety, safety.
Read the press release here.
Thursday, November 15, 2007
NHF meeting from around the blogosphere
Here's some other thoughts and reflections on the NHF's 59th Annual Meeting in Orlando.
http://www.kelleycom.com/blog/2007/11/nhf-59th-annual-meeting-good-times.html
http://girlbleeder.blogspot.com/2007/11/nhf-postmortum.html
http://girlbleeder.blogspot.com/2007/11/it-wasnt-all-bad-though.html
http://arizonapulley.blogspot.com/2007/11/are-we-sheep.html
http://www.kelleycom.com/blog/2007/11/nhf-59th-annual-meeting-good-times.html
http://girlbleeder.blogspot.com/2007/11/nhf-postmortum.html
http://girlbleeder.blogspot.com/2007/11/it-wasnt-all-bad-though.html
http://arizonapulley.blogspot.com/2007/11/are-we-sheep.html
Wednesday, November 14, 2007
NHF Annual Meeting Post, Finally
This Post is far overdue.
We went to the NHF annual meeting in Orlando in early November. Allison and I were going for a PEP Program steering committee meeting. So we thought we’d make a long weekend out of it and take the boys and see Disney. Allison’s sister, Heather, joined us for the weekend to help watch the boys while we had our meeting and other obligations. It turned out pretty much as we thought; a harried, hurried, packed and exhausting weekend. But fun.
Friday - after a morning flight into Orlando and the usual baggage claim, rental car, hotel check-in routine we struck out for the exhibition hall to find sustenance, free stuff and people.
Allison and I each had to work an hour manning the PEP booth while the rest perused the other booths, found the pool or rested in the room. The PEP booth was inside the Bayer exhibit. I know PEP is funded by a Bayer grant but I would have been much more comfortable with PEP in its own booth.
We didn’t register for the meeting and didn’t plan on attending any sessions. We really wanted to try to make a mini-vacation. We’ve been to NHF before, attended an On the Road in Dallas, went to an inhibitor summit last year as well as our regular chapter events. So we didn’t feel too guilty about missing the sessions.
Saturday - we had our PEP breakfast meeting then off to the exhibits for a few last-minute freebies and chats with old friends. Then it was off to The Magic Kingdom. (Thank you so much Matt Angell !). Needless to say the boys had a blast. We quickly learned the strategy of the Fast Pass and hit as many rides as we possibly could. We stayed until late and got to see the electric light parade and the fireworks show. Once again I turn to James Lileks for humorous and insightful descriptions of the Disney experience (see them here, here, here and here).
Sunday - was even more hectic. We had a late flight that evening so we could do more Disney during the day. So after checking out of the hotel and a Waffle House breakfast we trekked off to Animal Kingdom. Not impressed. Mind you, our time was short so we didn’t do shows. We pretty much stuck to the rides and activities. A number of the rides were similar to Magic Kingdom rides if not out and out the same ride with a different theme. So finally after the “spin around on a raft and get soaked ride” we decided to catch a bus to the Disney-MGM park.
The boys loved the Star Wars flight simulator ride and Heather and I laughed our heads off on The Twilight Zone Tower of Terror. But all too soon we needed to head for the exit and the bus back to Animal Kingdom and our car. We had plenty of time to top off the tank, return the rental car and make our flight. Well, except that we had to make some makeshift packaging for the long Frontierland toy rifle we bought for Jack that didn’t fit into any of our luggage. That, and I also got slightly lost.
After some starts and stops, u-turns and some colorful language we found a Walgreens and fashioned some packaging from a cardboard tri-fold project board. The fact that we had to do this to get the toy rifle home was a bit dismaying. I think it’s safe to say that most people coming to Disney are coming by air. So the lack of available packaging for an undoubtedly popular item that doesn’t readily pack well for air travel (unless you brought golf club, that I alas did not) is an oversight by Disney (and they don’t overlook much). We tried to get help at several Disney shops and at customer service. They would be happy to ship it for us but no dice on ready-to-go packaging. A niche the Disney folks, I think, would be happy to exploit.
We eventually made it to the airport, returned the car, changed into fresh clothes and got to the baggage check – 5 minutes late. The bags were marked ‘Late Check In’ but were told they could still get on the plane. Next, a quick dash to wait in the security line for the obligatory screening. At some point in which we came up one driver’s license short. But because of time constraints we resigned the i.d. to being lost and just barely made the boarding of the plane.
Both boys fell asleep on the flight and we arrived in Houston without further incident. We were happy to discover that our bags made the flight with us. All except, of course, the toy gun. But even that was on the first flight the next day and it was retrieved in due course.
It was a quick, frenzied, fun weekend with a little NHF, a lot of Disney and few pics which I’ll add below. If we never make it back to Orlando I’m glad for the boys that we made the trip. If we do venture back we’ll be that much better prepared for the Disney immersion.
The Boys: excited to ride the 1970's idea of futuristic transportation - the monorail.
After too many bad jokes and puns Carrick decided to take over direction of the Jungle Cruise.
This looks like a good place to sleep after a full day at Disney.
Gosh fellas he can read.
The bury a kid attraction was quite popular.
You gotta have one with the Castle.
We went to the NHF annual meeting in Orlando in early November. Allison and I were going for a PEP Program steering committee meeting. So we thought we’d make a long weekend out of it and take the boys and see Disney. Allison’s sister, Heather, joined us for the weekend to help watch the boys while we had our meeting and other obligations. It turned out pretty much as we thought; a harried, hurried, packed and exhausting weekend. But fun.
Friday - after a morning flight into Orlando and the usual baggage claim, rental car, hotel check-in routine we struck out for the exhibition hall to find sustenance, free stuff and people.
Allison and I each had to work an hour manning the PEP booth while the rest perused the other booths, found the pool or rested in the room. The PEP booth was inside the Bayer exhibit. I know PEP is funded by a Bayer grant but I would have been much more comfortable with PEP in its own booth.
We didn’t register for the meeting and didn’t plan on attending any sessions. We really wanted to try to make a mini-vacation. We’ve been to NHF before, attended an On the Road in Dallas, went to an inhibitor summit last year as well as our regular chapter events. So we didn’t feel too guilty about missing the sessions.
Saturday - we had our PEP breakfast meeting then off to the exhibits for a few last-minute freebies and chats with old friends. Then it was off to The Magic Kingdom. (Thank you so much Matt Angell !). Needless to say the boys had a blast. We quickly learned the strategy of the Fast Pass and hit as many rides as we possibly could. We stayed until late and got to see the electric light parade and the fireworks show. Once again I turn to James Lileks for humorous and insightful descriptions of the Disney experience (see them here, here, here and here).
Sunday - was even more hectic. We had a late flight that evening so we could do more Disney during the day. So after checking out of the hotel and a Waffle House breakfast we trekked off to Animal Kingdom. Not impressed. Mind you, our time was short so we didn’t do shows. We pretty much stuck to the rides and activities. A number of the rides were similar to Magic Kingdom rides if not out and out the same ride with a different theme. So finally after the “spin around on a raft and get soaked ride” we decided to catch a bus to the Disney-MGM park.
The boys loved the Star Wars flight simulator ride and Heather and I laughed our heads off on The Twilight Zone Tower of Terror. But all too soon we needed to head for the exit and the bus back to Animal Kingdom and our car. We had plenty of time to top off the tank, return the rental car and make our flight. Well, except that we had to make some makeshift packaging for the long Frontierland toy rifle we bought for Jack that didn’t fit into any of our luggage. That, and I also got slightly lost.
After some starts and stops, u-turns and some colorful language we found a Walgreens and fashioned some packaging from a cardboard tri-fold project board. The fact that we had to do this to get the toy rifle home was a bit dismaying. I think it’s safe to say that most people coming to Disney are coming by air. So the lack of available packaging for an undoubtedly popular item that doesn’t readily pack well for air travel (unless you brought golf club, that I alas did not) is an oversight by Disney (and they don’t overlook much). We tried to get help at several Disney shops and at customer service. They would be happy to ship it for us but no dice on ready-to-go packaging. A niche the Disney folks, I think, would be happy to exploit.
We eventually made it to the airport, returned the car, changed into fresh clothes and got to the baggage check – 5 minutes late. The bags were marked ‘Late Check In’ but were told they could still get on the plane. Next, a quick dash to wait in the security line for the obligatory screening. At some point in which we came up one driver’s license short. But because of time constraints we resigned the i.d. to being lost and just barely made the boarding of the plane.
Both boys fell asleep on the flight and we arrived in Houston without further incident. We were happy to discover that our bags made the flight with us. All except, of course, the toy gun. But even that was on the first flight the next day and it was retrieved in due course.
It was a quick, frenzied, fun weekend with a little NHF, a lot of Disney and few pics which I’ll add below. If we never make it back to Orlando I’m glad for the boys that we made the trip. If we do venture back we’ll be that much better prepared for the Disney immersion.
The Boys: excited to ride the 1970's idea of futuristic transportation - the monorail.
After too many bad jokes and puns Carrick decided to take over direction of the Jungle Cruise.
This looks like a good place to sleep after a full day at Disney.
Gosh fellas he can read.
The bury a kid attraction was quite popular.
You gotta have one with the Castle.
Monday, November 12, 2007
Bad Weekend for Buckeye State football
In a weekend that saw the Buckeyes likely drop from national title contention; the hapless, but improving, Browns couldn't hold onto a haftime lead over the Steelers. The Steelers continue to play well and fight for recognition in a conference dominated by news of the Patriots and Colts.
Veterans Day
Many people serve our great country in many ways. But it is on this day that we pay honor to those who serve and served in our armed forces. Those in uniform who stood ready, prepared to make the ultimate sacrifice for our country. God bless our Veterans.
Thursday, November 1, 2007
Halloween revisited
The boys had a fine time trick or treating. Jack had a massive haul of goodies, enough to maintain a sugar high for a month. Now the question of what to do with all that chocolate and candy. Let him eat as much as he possible can in one sitting then get sick and swear off candy for good or ration it out, extending Halloween well into next year? Or, eat it myself then cross my heart, spit in the dirt and pinkie swear I'll start going to the gym again.
Ah well, who knows?
Some better reflections on the Halloween just past come from the indispensable James Lileks. Lileks is a writer for the Minneapolis Star-Tribune. Sort of like Dave Barry or if in Houston, like Ken Hoffman but better, much better.
Here's a taste:
Read the whole thing here.
Ah well, who knows?
Some better reflections on the Halloween just past come from the indispensable James Lileks. Lileks is a writer for the Minneapolis Star-Tribune. Sort of like Dave Barry or if in Houston, like Ken Hoffman but better, much better.
Here's a taste:
I had a small light in my pocket that made ghastly moans when the motion sensor was activated, one of those cheap Chinese devices that probably broadcasts lead through sound waves. It turned itself on as I walked home, and a thin weird howl came from my pocket. There’s always a moment on Halloween when you get a faint fast flash of what it was like to be six on the spooookiest of nights, when the dark and the breeze and the sudden silence – followed by a crowd of leaves fleeing down the street – reminds you what it was like, how delicious it felt to laugh at the things you feared. Even if you didn’t really fear them. Even if you didn’t know just what it was you feared.
Read the whole thing here.
Wednesday, October 31, 2007
Sunday, October 28, 2007
Medicine that stops bleeding invented in Turkey
Various news agencies including Russian news agency RIA Novosti are reporting that a team of Turkish scientists have created a drug that will stop any bleeding within a few minutes. The article states the drug could be used to treat hemophilia.
I will remain, for the time, skeptical.
From the article:
The scientists say its an "old recipe."
Like I said, I'm skeptical and will wait for further proof.
I will remain, for the time, skeptical.
From the article:
"The drug, already approved by the Turkish Health Ministry, was made from a mix of herbs and plants, in particular, nettle, licorice, thyme, and grapevine."
The scientists say its an "old recipe."
Like I said, I'm skeptical and will wait for further proof.
Wednesday, October 24, 2007
Hemophilia Athletes
Here's a nice article about two boys who haven't let severe hemophilia slow them down. Its from the London Free Press in Ontario, Canada.
The opening graphs:
The opening graphs:
They play soccer and run long distance races. One's even a competitive
diver.They ran in this year's Toronto Marathon as part of a family relay
team.They act like normal 12-year-old kids.
Paul Travaglini and Emrik Burrows are about as normal as you can be, considering what they have to live with.
Both have severe hemophilia, a genetic disorder that results in the blood not clotting normally and making a bruise or cut a serious problem.
Read the whole thing
PEP Program News
Allison and I have been asked to be on the Steering Committee of the Parents Empowering Parents Program. We are very honored to continue working with this fantastic group of social workers, nurses and parents dedicated to bringing this program to the bleeding disorders community.
This month PEP went international with a Train the Trainers session in Australia (alas, Allison and I were not part of the team that went).
Wednesday, October 10, 2007
Employers offer health benefits - for pets !?!?
The cost of health care in America continues to rise. The national dialogue on health care has polarized into a free-market vs. universal single-payer debate. Yet more employers are expanding health care options, for pets that is.
This article from the Puget Sound Business Journal tells of this growing trend
If more employers offer and pay for pet insurance it will surely grow. As will the cost of pet health care and in turn pet insurance itself. Just like the human version; if someone else is paying for it why not have a few extra tests and that previously out of the question procedure?
At a time when employers are sharing more and more of the price increases with employees by way of higher deductibles and higher co-pays some misguided companies are willing to go down this slippery slope for pets, for property.
Its really calls into question priorities.
This article from the Puget Sound Business Journal tells of this growing trend
"Though pet insurance is just a small market now, industry experts say it could grow substantially. Of an estimated 69 million pet-owning households in the U.S, less than 2 percent own pet insurance, according to the American Society for the Prevention of Cruelty to Animals. The organization expects the market for pet insurance to grow 25 percent next year. "
If more employers offer and pay for pet insurance it will surely grow. As will the cost of pet health care and in turn pet insurance itself. Just like the human version; if someone else is paying for it why not have a few extra tests and that previously out of the question procedure?
At a time when employers are sharing more and more of the price increases with employees by way of higher deductibles and higher co-pays some misguided companies are willing to go down this slippery slope for pets, for property.
Its really calls into question priorities.
Saturday, October 6, 2007
Candidate Match Game
I took this USA Today candidate quiz twice. There were a few questions in which I liked more than one answer so I took it over with different answers. The results surprised me.
Both times the winner was Fred Thompson. I like Fred but I haven't really seen him as a strong candidate yet. Mitt Romney got a second and a third place with Mike Huckabee getting a second place and Rudy Giuliani getting a third.
All of which only serves to show which side of the aisle my political inclinations are on and that I think the Republican nomination process is far from over with no clear-cut front-runner.
Both times the winner was Fred Thompson. I like Fred but I haven't really seen him as a strong candidate yet. Mitt Romney got a second and a third place with Mike Huckabee getting a second place and Rudy Giuliani getting a third.
All of which only serves to show which side of the aisle my political inclinations are on and that I think the Republican nomination process is far from over with no clear-cut front-runner.
Mike in the news again, EFP kit for MRAP's
Plan calls for more armor on new combat vehicles
This USA Today article details the MRAP (Mine Resistant Abush Protected) Task Force's solution to EFP's (explosively formed projectiles).
From the article:
Of course the article has to contain some negative comments from Sen. Joseph Biden (D-Del), a democrat presidential hopeful. As if Biden has been right on top of the EFP issue for the last three years rather than being merely negative and critical of the war effort.
This USA Today article details the MRAP (Mine Resistant Abush Protected) Task Force's solution to EFP's (explosively formed projectiles).
From the article:
The Pentagon's method for combating EFPs involves adding armor to the sides of MRAPs, Brig. Gen. Michael Brogan said in an interview with USA TODAY. The armor is a modified version of what the military calls Frag Kit 6, Brogan said."I have a solution for EFPs, and I'm going to put it on the trucks I've already bought," Brogan said.
The military tested the armor at Aberdeen Proving Ground in Maryland by firing explosives at it. EFPs fire a slug of metal at high speeds that penetrate armor and spray pieces of shrapnel that can kill or injure the troops inside the vehicle.
Of course the article has to contain some negative comments from Sen. Joseph Biden (D-Del), a democrat presidential hopeful. As if Biden has been right on top of the EFP issue for the last three years rather than being merely negative and critical of the war effort.
Wednesday, October 3, 2007
Hemophilia News
Franco-American Alliance Targets Hemophilia Market
France is now the largest shareholder of GTC Biotherapeutics Inc, a Framingham, Mass firm. Through state-owned Laboratoire Francais du Fractionnement et des Biotechnologies SA (LFB), France has entered into some collaborations of great interest to the hemophilia community. From Bioworld International:
A lower-cost alternative to NovoSeven would be welcome news to inhibitor patients facing lifetime cap issues.
Accused in tainted blood trial exonerated
Here's a story I was not aware of until recently. It concerns some old players in the tainted blood/factor supply saga from the 1980's. Canada charged several doctors, the Canadian Red Cross and Armour Pharmaceutical Co. with criminal negligence and endangering the public for allegedly allowing Armour's factor tainted with HIV and Hepatitis C to be given to hemophilia patients. I haven't read enough or know enough of the facts to form an opinion in this case. But it's still a reminder of the vigilance necessary so that this never happens again.
This a more personal look at this story:
Promise of almost normal life destroyed by tainted blood, hemophiliacs say
France is now the largest shareholder of GTC Biotherapeutics Inc, a Framingham, Mass firm. Through state-owned Laboratoire Francais du Fractionnement et des Biotechnologies SA (LFB), France has entered into some collaborations of great interest to the hemophilia community. From Bioworld International:
"The first program in the collaboration is development of a transgenically produced recombinant form of human factor VII a (rhFVIIa), a clotting factor for the X-linked (male) genetic disorder that will treat Type A hemophilia and may treat Type B with potential secondary uses for trauma and uncontrolled bleeding."
"LFB and GTC said they intend to become the low-cost producer of rhFVIIa, noting that the current product on the market, NovoSeven, from Bagsvaerd, Denmark-based Novo Nordisk A/S, is high in price yet enjoys strong market growth. Sales doubled from $400 million in 2000 to $800 million in 2005, and the estimate is for $2 billion in 2012, Pennacino said."
A lower-cost alternative to NovoSeven would be welcome news to inhibitor patients facing lifetime cap issues.
Accused in tainted blood trial exonerated
Here's a story I was not aware of until recently. It concerns some old players in the tainted blood/factor supply saga from the 1980's. Canada charged several doctors, the Canadian Red Cross and Armour Pharmaceutical Co. with criminal negligence and endangering the public for allegedly allowing Armour's factor tainted with HIV and Hepatitis C to be given to hemophilia patients. I haven't read enough or know enough of the facts to form an opinion in this case. But it's still a reminder of the vigilance necessary so that this never happens again.
This a more personal look at this story:
Promise of almost normal life destroyed by tainted blood, hemophiliacs say
Past Weekend Sports recap:
Craig Biggio
3,060 hits - 20th all time
2,850 games played
668 doubles
414 steals
285 hit-by-pitch - second all time
20 seasons
1 team
Houston and baseball bid a fond farewell to one of the best in the game. The player and the way he played the game will be sorely missed. Thanks Big.
The ups:
President's Cup
U.S.A. - 19 1/2
Intn'l - 14 1/2
Texas A&M 34
Baylor 10
The downs:
Pittsburgh Steelers 14
Arizona Cardinals 21
3,060 hits - 20th all time
2,850 games played
668 doubles
414 steals
285 hit-by-pitch - second all time
20 seasons
1 team
Houston and baseball bid a fond farewell to one of the best in the game. The player and the way he played the game will be sorely missed. Thanks Big.
The ups:
President's Cup
U.S.A. - 19 1/2
Intn'l - 14 1/2
Texas A&M 34
Baylor 10
The downs:
Pittsburgh Steelers 14
Arizona Cardinals 21
From one Marine General to another
Marine General Peter Pace, the outgoing Chairman of the Joint Chiefs Of Staff, retired Monday. Reluctantly General Pace steps down after only one term as Chairman. The Bush administration decided against re-nominating General Pace for fear of a circus created by the Democrats during the re-confirmation hearings. For a man of General Pace's caliber who has served this country with honor, valor and dignity to be sent to retirement because of partisan politics is absolutely pathetic. He is a great man who deserves better.
This video is of the change of command Monday honoring General Pace and incoming CJCS Admiral Mike Mullen. General Pace's comments are at times moving and always clear, direct and hopeful. He speaks as one who understands what is good and true in this country and what is necessary to keep this country great. Thank you General Pace for not only your service to this country but the admirable and honorable way you have served.
Here is a portion of General Pace's comments.
The whole ceremony can be seen following the below link. General Pace's closing comments are from minute 84 to about 98.3
CJCS Ceremony 01 October, 2007
This video is of the change of command Monday honoring General Pace and incoming CJCS Admiral Mike Mullen. General Pace's comments are at times moving and always clear, direct and hopeful. He speaks as one who understands what is good and true in this country and what is necessary to keep this country great. Thank you General Pace for not only your service to this country but the admirable and honorable way you have served.
Here is a portion of General Pace's comments.
The whole ceremony can be seen following the below link. General Pace's closing comments are from minute 84 to about 98.3
CJCS Ceremony 01 October, 2007
Friday, September 28, 2007
How much is a Marine General worth?
Update: The Winning bid comes in at $21.00. Way to go mom! Just kidding. Twenty one bucks. Not bad especially since I see the same guy is selling an autographed photo of Gen. James Mattis (among others) that's at $20.17 with a day left on the auction. Mattis is soon to be a Marine 4-star in command of United States Joint Forces Command (USJFCOM).
Apparently the bidding starts at $5.00. An autographed photo of Marine Corps Brigadier General Michael M. Brogan is being auctioned here on ebay bidding standing now at $5.00.
Yes, the last name is the same. As noted in a 7/27/2007 post Mike, the commanding officer of Marine Corps Systems Command, is my oldest brother.
Apparently the bidding starts at $5.00. An autographed photo of Marine Corps Brigadier General Michael M. Brogan is being auctioned here on ebay bidding standing now at $5.00.Yes, the last name is the same. As noted in a 7/27/2007 post Mike, the commanding officer of Marine Corps Systems Command, is my oldest brother.
So ya better hurry! As of this post only 3 days left on the auction.
Thursday, September 27, 2007
Lone Star Chapter Family Camp
Friday we're off to the Lone Star Chapter of the NHF's Third Annual Family Camp for the weekend. The first two years of Hemophilia Family Camp have been great successes and the chapter hopes for bigger and better things this year.
It's been a great time to catch up with friends, share stories and learn some new things.
Once again the camp will be at Camp For All, outside Brenham, TX. Camp For All is a fantastic facility that's been serving special needs groups since 1998.
My boys have loved all the activities especially the canoeing, archery and the ropes course.
U.S. out strong after first day Foursomes
The Presidents Cup
They played to a 17-17 tie in 2003 and the U.S. took the Cup in 2005, 18 1/2 to 15 1/2.
This year the teams are as evenly matched as they've ever been. The difference; Tiger Woods. I know, his Presidents Cup record is only 10-9-1, but he's not that far removed from his dominant year-end run in the FedEx Cup playoffs and should bring the U.S. 4 points.
First Day Foursomes prediction: U.S. 3 - Inter. 3
With the Matches going like this:
Match 1 - U.S.
Match 2 - International
Match 3 - Halved
Match 4 - Halved
Match 5 - International
Match 6 - U.S.
The best Matches:
Match 1 - Stricker/Mahan vs. Scott/Ogilvy -- three of the hottest players in Stricker, Mahan and Ogilvy.
Match 4 - Toms/Furyk vs. Els/Cabrera -- this should be a blow by blow grind to the end.
China's paradox
They're two they're four they're six they're eight
Shunting trucks and hauling freight
red and green and brown and blue
they're the really useful crew
(too bad they're toxic to me and you)
Once again toys coming out of China are found to contain high levels of lead in the surface paint and some metal parts.
So the country that hasn't allowed imports of foreign-made factor products for nearly 20 years (see post below) out of concern for its hemophilia population has very little trouble exporting toxic toys (including our buddy Thomas) around the world and says it's no big deal.
In Bejing, Commerce Ministry spokesman Wang Xinpei on Thursday said: "Our attitude toward the toy problem has always been the same, that the problem is one in a thousand. We'll still be highly responsible and seriously solve the problem."Nice. I'm all for China being connected to the world market but hey you've got to play by the rules. We don't send stuff that hurts your people, you don't send stuff that hurts our people.
Tuesday, September 25, 2007
How about a little Hemophilia news from around the web:
Imports of blood drug approved
China approves imports of recombinant factor VIII.
What an interesting little article!
We can complain, whether on the left, right or center, about U.S. government bureaucracy, the FDA, etc. But how about this gem,
“The authorities imposed the ban in 1986, in response to a case of HIV infection caused by imported factor VIII that was detected around 1983.”
So the Chinese communists banned foreign-made factor for 20 years although there hasn’t been a case of viral transmission from a factor product since 1990-1991 (reference needed). Interesting.
And how about this:
“Larry Zhang, regional head for Asia Pacific of Bayer Healthcare, said the treatment would be made available at a lower price in China than in other countries because of the financial difficulties that many patients here face and the lack of a comprehensive health insurance scheme.”
“…lack of a comprehensive health insurance scheme.” In other words the deep pockets of a third party payer.
“Recombinant-clotting factor will cost no more than 5 yuan (65 cents) in China, Zhang said. The average international price is 30 yuan.”
I’m no math whiz but if 5 yuan is $.65 then the average international price of 30 yuan is $3.90. That seems to be about 2-3 times the U.S. price (or at least a reasonable U.S. price).
Doc's a role model in triathlon
Hemophilia doc runs marathons and triathlons. Calling Dr. Hoots to the starting line.
Is Flamel Catching On?
From the Motley fool:
Flamel Technologies has signed a deal to develop an improved formulation of an unnamed Wyeth drug.
"BeneFIX and ReFacto both fit the criteria for compounds that could benefit from Flamel's Medusa platform. They are proteins for which a new long-lasting formulation would definitely increase patient convenience and compliance, especially since they are administered intravenously or via an injection. Equally as important is that the drugs lose patent protection in 2011 and 2010, respectively."
Competition for longer lasting factor products is always welcome. Choice and competition can only benefit the consumer.
China approves imports of recombinant factor VIII.
What an interesting little article!
We can complain, whether on the left, right or center, about U.S. government bureaucracy, the FDA, etc. But how about this gem,
“The authorities imposed the ban in 1986, in response to a case of HIV infection caused by imported factor VIII that was detected around 1983.”
So the Chinese communists banned foreign-made factor for 20 years although there hasn’t been a case of viral transmission from a factor product since 1990-1991 (reference needed). Interesting.
And how about this:
“Larry Zhang, regional head for Asia Pacific of Bayer Healthcare, said the treatment would be made available at a lower price in China than in other countries because of the financial difficulties that many patients here face and the lack of a comprehensive health insurance scheme.”
“…lack of a comprehensive health insurance scheme.” In other words the deep pockets of a third party payer.
“Recombinant-clotting factor will cost no more than 5 yuan (65 cents) in China, Zhang said. The average international price is 30 yuan.”
I’m no math whiz but if 5 yuan is $.65 then the average international price of 30 yuan is $3.90. That seems to be about 2-3 times the U.S. price (or at least a reasonable U.S. price).
Doc's a role model in triathlon
Hemophilia doc runs marathons and triathlons. Calling Dr. Hoots to the starting line.
Is Flamel Catching On?
From the Motley fool:
Flamel Technologies has signed a deal to develop an improved formulation of an unnamed Wyeth drug.
"BeneFIX and ReFacto both fit the criteria for compounds that could benefit from Flamel's Medusa platform. They are proteins for which a new long-lasting formulation would definitely increase patient convenience and compliance, especially since they are administered intravenously or via an injection. Equally as important is that the drugs lose patent protection in 2011 and 2010, respectively."
Competition for longer lasting factor products is always welcome. Choice and competition can only benefit the consumer.
Wednesday, September 19, 2007
We are winning
Things are slowly coming into focus. For the American people, for the Middle East and for the world. Because of the valor and determination of American soldiers, marines, sailors and airmen the war on terror is being won. Again and again, day by day, step by step our men and women prove to the Iraqi people and by extension the Middle East and the world that the true intentions of U.S policy is to foster liberty and freedom.
Despite previously ill-conceived strategies and ineffectual policies the U.S. servicemen and women have persevered against a brutal and ruthless enemy in Iraq and are turning the tide. Because we stayed and because the American forces never gave up; Al-Qaeda in Iraq resorted to more and more desperate measures to ramp up the violence in an attempt to foment a rejection of America both in Iraq and back home in the U.S.
But they failed. In carrying out their despicable mandates they showed their true nature as brutal, ruthless, savage fascists. Caring not for a true expression of religion but rather a perverted and repressive ideology. An ideology that has been rejected by the Iraqi people in the Al Anbar province and elsewhere. Al Qaeda’s desperation has warranted a rejection from a previously supportive Saudi cleric Sheik Salman al-Odeh who has asked;
“How much blood has been spilled? How many innocent children, women and old people have been killed, maimed and expelled from their homes in the name of al-Qaida?”
A recent Pew survey shows a marked decline of support in Arab countries for suicide bombings
The percentage of Muslims saying that suicide bombing is justified in the defense of Islam has declined dramatically over the past five years in five of eight countries where trends are available. In Lebanon, for example, just 34% of Muslims say suicide bombings in the defense of Islam are often or sometimes justified; in 2002, 74% expressed this view.
And what to make of the Israeli incursion into Syria to knock out a weapons depot. Where is the hue and cry from the Middle East? Two things come to mind. One, Syria and by extension Iran was caught red-handed with an attempt to jump-start a nuclear program with ready made weapons from North Korea and they don’t wish for further investigation. And two, the ‘moderate’ countries are as fearful of a nuclear Iran/Syria as the rest of the world and are happy to let the Israelis do the dirty work.
Our presence in Iraq has been long, at times discouraging and is far from over. I expect setbacks and detours along the way but the seeds we have sown in Iraq will pay dividends. There are signs of stabilization from Lebanon and the hope for moderation in the greater Arab world with the emerging rejection of Al Qaeda is encouraging.
Update: Very soon after I wrote this reports came out of Lebanon that Antoine Ghane an anti-Syrian Lebanese MP was murdered by a car bomb. The Syrians are feeling the squeeze. Despite all their efforts to the contrary the strong currents of democracy and self-determination still flow in Lebanon. Couple this with their chemical weapons 'accident' and Israel's shredding of their aerial defences and Syria is feeling vulnerable. So they lash out through cowardly terror. I should note that Israel is taking nothing lightly. Despite the Yom Kippur, Day of Atonement holiday all IDF leaves have been cancelled so that the Israeli defences are at full strength.
Despite previously ill-conceived strategies and ineffectual policies the U.S. servicemen and women have persevered against a brutal and ruthless enemy in Iraq and are turning the tide. Because we stayed and because the American forces never gave up; Al-Qaeda in Iraq resorted to more and more desperate measures to ramp up the violence in an attempt to foment a rejection of America both in Iraq and back home in the U.S.
But they failed. In carrying out their despicable mandates they showed their true nature as brutal, ruthless, savage fascists. Caring not for a true expression of religion but rather a perverted and repressive ideology. An ideology that has been rejected by the Iraqi people in the Al Anbar province and elsewhere. Al Qaeda’s desperation has warranted a rejection from a previously supportive Saudi cleric Sheik Salman al-Odeh who has asked;
“How much blood has been spilled? How many innocent children, women and old people have been killed, maimed and expelled from their homes in the name of al-Qaida?”
A recent Pew survey shows a marked decline of support in Arab countries for suicide bombings
The percentage of Muslims saying that suicide bombing is justified in the defense of Islam has declined dramatically over the past five years in five of eight countries where trends are available. In Lebanon, for example, just 34% of Muslims say suicide bombings in the defense of Islam are often or sometimes justified; in 2002, 74% expressed this view.
And what to make of the Israeli incursion into Syria to knock out a weapons depot. Where is the hue and cry from the Middle East? Two things come to mind. One, Syria and by extension Iran was caught red-handed with an attempt to jump-start a nuclear program with ready made weapons from North Korea and they don’t wish for further investigation. And two, the ‘moderate’ countries are as fearful of a nuclear Iran/Syria as the rest of the world and are happy to let the Israelis do the dirty work.
Our presence in Iraq has been long, at times discouraging and is far from over. I expect setbacks and detours along the way but the seeds we have sown in Iraq will pay dividends. There are signs of stabilization from Lebanon and the hope for moderation in the greater Arab world with the emerging rejection of Al Qaeda is encouraging.
Update: Very soon after I wrote this reports came out of Lebanon that Antoine Ghane an anti-Syrian Lebanese MP was murdered by a car bomb. The Syrians are feeling the squeeze. Despite all their efforts to the contrary the strong currents of democracy and self-determination still flow in Lebanon. Couple this with their chemical weapons 'accident' and Israel's shredding of their aerial defences and Syria is feeling vulnerable. So they lash out through cowardly terror. I should note that Israel is taking nothing lightly. Despite the Yom Kippur, Day of Atonement holiday all IDF leaves have been cancelled so that the Israeli defences are at full strength.
While we watch O.J. again
It has been said that America's greatest trait is that we have a short national memory, its also our worst trait. What allows us to move on after tragedies makes us oblivious to what is truly important.
So as we watch O. J. again these important headlines are being ignored:
'Chemical warhead blast in Syria killed Iranian advisers'
Israeli aircraft 'bombed Syria'
A Rising Tide Lifts Mood in the Developing World
Support for Suicide Bombing Drops Sharply in Muslim Countries
So as we watch O. J. again these important headlines are being ignored:
'Chemical warhead blast in Syria killed Iranian advisers'
Israeli aircraft 'bombed Syria'
A Rising Tide Lifts Mood in the Developing World
Support for Suicide Bombing Drops Sharply in Muslim Countries
Wednesday, September 12, 2007
Been away
The blogging has taken a serious backseat to my real life.
A quick recap:
Most importantly my parents 50th Wedding Anniversary party was a smashing success (not that anything was smashed, well maybe me, but not until much later in the evening). So many friends and family made journeys from near and far it was a very special evening for a remarkable couple.
After many hours scanning and cropping photos and editing and re-editing the PowerPoint slide show I finally finished it and by all accounts was very well received. I’ll try to see if I can post it, although I’m not sure if the music clips will play. (adding the music clips into the slide show was a nightmare in and of itself)
Now that things have calmed down to a normal roar I hope to post more regularly.
A quick recap:
Most importantly my parents 50th Wedding Anniversary party was a smashing success (not that anything was smashed, well maybe me, but not until much later in the evening). So many friends and family made journeys from near and far it was a very special evening for a remarkable couple.
After many hours scanning and cropping photos and editing and re-editing the PowerPoint slide show I finally finished it and by all accounts was very well received. I’ll try to see if I can post it, although I’m not sure if the music clips will play. (adding the music clips into the slide show was a nightmare in and of itself)
Now that things have calmed down to a normal roar I hope to post more regularly.
Wednesday, August 29, 2007
Back to School
As the dog days of summer wind down and the kids head back to school thoughts turn to learning and the state of education in the United States. Classicist and historian Victor Davis Hanson confronts this topic in a piece at National Review Online here.
The main graphs:
"We should first scrap the popular therapeutic curriculum that in the scarce hours of the school day crams in sermons on race, class, gender, drugs, sex, self-esteem, or environmentalism. These are well-intentioned efforts to make a kinder and gentler generation more sensitive to our nation’s supposed past and present sins. But they only squeeze out far more important subjects.
The old approach to education saw things differently than we do. Education (“to lead out” or “to bring up”) was not defined as being “sensitive” to, or “correct” on, particular issues. It was instead the rational ability to make sense of the chaotic present through the abstract wisdom of the past.
So literature, history, math and science gave students plenty of facts, theorems, people, and dates to draw on. Then training in logic, language, and philosophy provided the tools to use and express that accumulated wisdom. Teachers usually did not care where all that training led their students politically — only that their pupils’ ideas and views were supported with facts and argued rationally."
Reading through Jack’s school information yesterday I saw his 2nd grade class was going to work on International Peace Day collages. I’m all for world peace (hard to achieve what with planes slamming into buildings, embassies being bombed, plots aplenty to attack and terrorize the U.S and Israel, but I’m all for peace). Collages are kinda cool too. But really the emphasis on political correctness and sensitivity is far too great in many of our schools. As professor Hanson says, teach the basics then reason and argument can be taught from there.
The main graphs:
"We should first scrap the popular therapeutic curriculum that in the scarce hours of the school day crams in sermons on race, class, gender, drugs, sex, self-esteem, or environmentalism. These are well-intentioned efforts to make a kinder and gentler generation more sensitive to our nation’s supposed past and present sins. But they only squeeze out far more important subjects.
The old approach to education saw things differently than we do. Education (“to lead out” or “to bring up”) was not defined as being “sensitive” to, or “correct” on, particular issues. It was instead the rational ability to make sense of the chaotic present through the abstract wisdom of the past.
So literature, history, math and science gave students plenty of facts, theorems, people, and dates to draw on. Then training in logic, language, and philosophy provided the tools to use and express that accumulated wisdom. Teachers usually did not care where all that training led their students politically — only that their pupils’ ideas and views were supported with facts and argued rationally."
Reading through Jack’s school information yesterday I saw his 2nd grade class was going to work on International Peace Day collages. I’m all for world peace (hard to achieve what with planes slamming into buildings, embassies being bombed, plots aplenty to attack and terrorize the U.S and Israel, but I’m all for peace). Collages are kinda cool too. But really the emphasis on political correctness and sensitivity is far too great in many of our schools. As professor Hanson says, teach the basics then reason and argument can be taught from there.
Tsarevich Alexei found, again, mabey..
Archaeologists claim to have found the remains of Russian Tsarevich Alexei Nikolaevich Romanov and his sister the Grand Duchess Maria, reports the St. Petersburg Times here.
Alexei is perhaps the most famous person in history to have had hemophilia. He was passed the hemophilia gene through his mother Alexandra. Alexandra was the granddaughter of Queen Victoria of England by whom the so called 'royal disease' of hemophilia was passed to many of the royal houses of Europe through her descendants.
Alexei is perhaps the most famous person in history to have had hemophilia. He was passed the hemophilia gene through his mother Alexandra. Alexandra was the granddaughter of Queen Victoria of England by whom the so called 'royal disease' of hemophilia was passed to many of the royal houses of Europe through her descendants.
Friday, August 24, 2007
Been neglecting the blog for a while.
And I will probably continue to neglect it for a couple more weeks. It's a busy time at work and most free moments at home are being spent scanning photos preparing a PowerPoint slide show for my parents 50th Wedding anniversary celebration.
The Kansas City Mo. PEP Train the Trainers was a great success. We tried a new approach to the training and it went very well. We stayed at the Marriott Country Club. The plaza shopping district was very interesting, especially at night. Sort of a mix of Austin's 6th street, Dallas's West End and what I would imagine would be New York City/Central Park. Very nice to upscale shopping, dinning, nightclubs, bars, street performers (Hari Krishna's even). Made for an interesting experience.
The Kansas City Mo. PEP Train the Trainers was a great success. We tried a new approach to the training and it went very well. We stayed at the Marriott Country Club. The plaza shopping district was very interesting, especially at night. Sort of a mix of Austin's 6th street, Dallas's West End and what I would imagine would be New York City/Central Park. Very nice to upscale shopping, dinning, nightclubs, bars, street performers (Hari Krishna's even). Made for an interesting experience.
Thursday, August 16, 2007
Off to Kansas City for PEP
Allison and I are off to Kansas City for a Train the Trainers session of Parents Empowering Parents. If you don't know about PEP, it is a fantastic parenting skills program specifically geared for parents of children with bleeding disorders.
Check out the PEP website.
We first took a PEP class before Jack was even one year old and knew right away that this was an important program for the bleeding disorders community. The great thing about PEP is it is (ideally) presented by a team of a social worker, nurse and a parent or parents. Each member of the team brings unique knowledge, experience and perspective to the program.
This weekend we're helping facilitate a Train the Trainers (TTT) program where we train parents, nurses and social workers on how to put on a PEP and take it back to their own communities.
We have had the privilege these last couple years to help with TTT and in doing so have worked with the primary creator of the program, Danna Merritt, MSW, CSW as well as our great team from the Houston Treatment Center (Gulf States) Ed Kuebler, MSW, CSW and Madeline Cantini, RN.
These folks have given so much and are so valuable to our bleeding disorders communities, words cannot express our gratitude.
Check out the PEP website.
We first took a PEP class before Jack was even one year old and knew right away that this was an important program for the bleeding disorders community. The great thing about PEP is it is (ideally) presented by a team of a social worker, nurse and a parent or parents. Each member of the team brings unique knowledge, experience and perspective to the program.
This weekend we're helping facilitate a Train the Trainers (TTT) program where we train parents, nurses and social workers on how to put on a PEP and take it back to their own communities.
We have had the privilege these last couple years to help with TTT and in doing so have worked with the primary creator of the program, Danna Merritt, MSW, CSW as well as our great team from the Houston Treatment Center (Gulf States) Ed Kuebler, MSW, CSW and Madeline Cantini, RN.
These folks have given so much and are so valuable to our bleeding disorders communities, words cannot express our gratitude.
Thursday, August 9, 2007
756*, 757*
Congratulations Barry. Now please go back to being sullen and inaccessible. I don’t want to hear about you anymore.
It’s a shame, Bonds is/was a great player. His numbers with the Pirates and with the Giants through 1999 were among the best in the game. Then at a time in his life when the numbers should be slacking his started jumping.
Did his corked body produce more home runs than he would have hit otherwise? Probably. He’s certainly played at a higher level, longer than he should have. At a time in life when the reflexes slow and it takes longer to recover from the nicks and dings he’s kept going.
I wonder if his dreams are haunted. Haunted by a one-legged Sid Bream sputtering around third scoring on the weak throw from the All-Star left fielder.
So much attention on Bonds and his drama when true ambassadors of the game like this future Hall of Famer finish up a career in relative obscurity.
It’s a shame, Bonds is/was a great player. His numbers with the Pirates and with the Giants through 1999 were among the best in the game. Then at a time in his life when the numbers should be slacking his started jumping.
Did his corked body produce more home runs than he would have hit otherwise? Probably. He’s certainly played at a higher level, longer than he should have. At a time in life when the reflexes slow and it takes longer to recover from the nicks and dings he’s kept going.
I wonder if his dreams are haunted. Haunted by a one-legged Sid Bream sputtering around third scoring on the weak throw from the All-Star left fielder.
So much attention on Bonds and his drama when true ambassadors of the game like this future Hall of Famer finish up a career in relative obscurity.
Tuesday, August 7, 2007
Dear God ! Not the Australian wine crops.
From the TimesOnline.
Australian wines in crisis
With freak late-harvest frosts and a drought forcing yields down, Australia is in deep trouble
Global warming strikes again
Australian wines in crisis
With freak late-harvest frosts and a drought forcing yields down, Australia is in deep trouble
Global warming strikes again
Monday, August 6, 2007
Alternatives to socialized medicine
I know, I know. I’ve been slow getting to these.
First, a piece by Raj Bal at Real Clear Politics. Mr. Bal advocates cost transparency of health care costs. I agree with this a lot. Mr. Bal writes,
Now apply this to hemophilia. Ever try to get a factor price out of a home health care company? Yea. Good luck.
Read it all here.
The second piece is by Rudy Giuliani who looks not at government run health care but government initiatives that could increase access to affordable heath care coverage through tax breaks and Health Savings Accounts.
Mayor Giuliani writes
Although I agree with these sentiments in the macro, how do proposals like these affect chronic care situations. Access to health insurance is always a problem with pre-existing conditions. Its a complex problem in need of much more debate and ideas.
Read all of Mayor Giuliani's piece here.
First, a piece by Raj Bal at Real Clear Politics. Mr. Bal advocates cost transparency of health care costs. I agree with this a lot. Mr. Bal writes,
"Consumers have an insatiable appetite to learn more about all things related to their health. Last year, some 113 million of them used the Internet to get health information. Each day, eight million are doing their own research on diets, medical conditions, diseases, treatment options and, in some areas, even the performance of hospitals and doctors.
Yet as we enter the enlightened age of consumer-directed health care, no one can get an answer to what would seem to be simple questions: What will be the office visit charges for a general physical exam? What hospital costs can I expect to pay for a routine procedure?"
Now apply this to hemophilia. Ever try to get a factor price out of a home health care company? Yea. Good luck.
Read it all here.
The second piece is by Rudy Giuliani who looks not at government run health care but government initiatives that could increase access to affordable heath care coverage through tax breaks and Health Savings Accounts.
Mayor Giuliani writes
"AMERICA is at a crossroads when it comes to health care.
All Americans want to increase the quality, affordability, and portability of
health care. The 2008 election presents a decisive debate on how to reach
this goal.
The Democratic candidates for president believe in a government-mandated model that looks for inspiration to the socialized medical systems of Europe, Canada, and Cuba.
Most Republicans believe in expanding individual choice and decision-making. I believe we can reduce costs and improve the quality of care by increasing competition. We can do it through tax cuts, not tax hikes. We can do it by empowering patients and their doctors, not government bureaucrats. Instead of being more like Europe, we need to be more like America."
Although I agree with these sentiments in the macro, how do proposals like these affect chronic care situations. Access to health insurance is always a problem with pre-existing conditions. Its a complex problem in need of much more debate and ideas.
Read all of Mayor Giuliani's piece here.
Sunday, August 5, 2007
Long Week
Its been a long week. Allison and the boys have gone to Florida for a stay at her aunt's. I haven't been up to posting anything during this time. I'll try to make up for it tomorrow. I've got a couple of articles about consumer directed health care I want to share. See you tomorrow.
Saturday, July 28, 2007
We had to have a study for this?
Clinical Data Suggest Decreased Bleeding Risk in People With Severe Hemophilia A While Maintaining Factor VIII Levels Above One Percent
Anther press release on PRNewswire from Baxter that details a study that seems to prove the obvious.
Anther press release on PRNewswire from Baxter that details a study that seems to prove the obvious.
Bayer shows progress on longer-acting rFVIII
Bayer has been working on a PEGylated form of Recombinant Factor VIII. Read the press release on PRNewswire here.
Friday, July 27, 2007
Generic Biologicals ?
Sound crazy? Sound too good to be true? Maybe. But Ramesh Ponnuru at National Review Online has written about a new bill with bipartisan support that would increase competition for biologicals.
Hemophilia is easily one of the most expensive chronic care conditions to treat. Think of the difference between a 'dispense as written' name brand drug for say $140 (even with insurance) and a $5 co-pay for the generic. Now imagine those market forces at play with factor products. I'm sure even 'generic' factor products would still be expensive to produce but any price break would be welcome when worrying about lifetime caps.
Ponnuru states "The principal argument against the bill is that replicating biologics is much harder than producing generic versions of other medicines, and that generic biologics could therefore be unsafe." Safety is, of course, of prime concern. Ponnuru continues "But there is no reason to think that the FDA would approve unsafe generic biologics."
Generic clotting factor products may never be viable. But at least with passage of a bill like this they could be possible.
Read the whole thing here.
Hemophilia is easily one of the most expensive chronic care conditions to treat. Think of the difference between a 'dispense as written' name brand drug for say $140 (even with insurance) and a $5 co-pay for the generic. Now imagine those market forces at play with factor products. I'm sure even 'generic' factor products would still be expensive to produce but any price break would be welcome when worrying about lifetime caps.
Ponnuru states "The principal argument against the bill is that replicating biologics is much harder than producing generic versions of other medicines, and that generic biologics could therefore be unsafe." Safety is, of course, of prime concern. Ponnuru continues "But there is no reason to think that the FDA would approve unsafe generic biologics."
Generic clotting factor products may never be viable. But at least with passage of a bill like this they could be possible.
Read the whole thing here.
Drugs in the Pipeline and the FDA
Here's a piece at Reason online about experimental drugs for terminally ill patients and the debate concerning those patients' rights to access those drugs before they have been FDA approved.
The issues here concern the safety and efficacy of new drugs offset by urgent needs of these patients for potentially life-saving or life-extending drugs.
In the hemophilia community we're always hopeful for new factor products. We hope in the near term for factor with longer half-lives or oral or topical factor products. We hope eventually for a cure. But new pharmaceuticals take time and research and clinical trial and lots and lots of money. But does it take too much time? Can more new drugs be fast-tracked, saving time and costs that you know will end up being paid by the end-user (or rather the third party payer).
With good reason this community is cautious of product safety and is suspicious of product sales taking precedence over product safety. It’s a delicate balance to want the product improvements from the very industry that many still mistrust.
I don't know the answers. I know I want a cure for Jack as soon as possible And in lieu of that I want better and easier factor products. But at what risks?
The issues here concern the safety and efficacy of new drugs offset by urgent needs of these patients for potentially life-saving or life-extending drugs.
In the hemophilia community we're always hopeful for new factor products. We hope in the near term for factor with longer half-lives or oral or topical factor products. We hope eventually for a cure. But new pharmaceuticals take time and research and clinical trial and lots and lots of money. But does it take too much time? Can more new drugs be fast-tracked, saving time and costs that you know will end up being paid by the end-user (or rather the third party payer).
With good reason this community is cautious of product safety and is suspicious of product sales taking precedence over product safety. It’s a delicate balance to want the product improvements from the very industry that many still mistrust.
I don't know the answers. I know I want a cure for Jack as soon as possible And in lieu of that I want better and easier factor products. But at what risks?
Big brother Mike and MRAP's
Last week was also a big week for the extended Brogan family. Brother Mike had some face time at a Pentagon press briefing and before the House Armed Services committee. Mike is a USMC Brigadier General, Commander of Marine Corps Systems Command, the acquisition command for the Marines.
The briefing and congressional appearance had to do with an urgent request to shift defense money into acquiring MRAP’s (mine resistant ambush protected vehicles) for our warfighters in Iraq.
Mike handled himself well in front of both the press and the House committee.
Watching both events I can’t help but note the stark difference between the poise, demeanor and character of the men in uniform in comparison to the journalists and the politicians.
Needless to say we're especially proud of Mike and of all the men and women in uniform serving our country.
Mike (far right) at Pentagon briefing
The Pentagon MRAP site is here.
The briefing and congressional appearance had to do with an urgent request to shift defense money into acquiring MRAP’s (mine resistant ambush protected vehicles) for our warfighters in Iraq.
Mike handled himself well in front of both the press and the House committee.
Watching both events I can’t help but note the stark difference between the poise, demeanor and character of the men in uniform in comparison to the journalists and the politicians.
Needless to say we're especially proud of Mike and of all the men and women in uniform serving our country.
Mike (far right) at Pentagon briefing
The Pentagon MRAP site is here.
Hemophilia Camp
Jack went to camp for the first time this year. Wohoo!! Without a doubt he had a blast. I knew he would. I had a blast last year when I volunteered as a counselor (it was hot, sweaty, tiring and hard work but worth every minute of it).
In Texas our hemophilia camp is Camp Ailihpomeh held at Camp John Marc near Meridian. John Marc is a great camp run by Vance and Karen Gilmore and their wonderful staff.
I want to give a special thanks to the Camp Ailihpomeh organizers and volunteers from the Texas NHF Chapters and treatment centers and all across the community who work so hard to make this such a fun week for the boys.
Here are some pics of Jack from the week.
The rest of the camp pics can be seen here
In Texas our hemophilia camp is Camp Ailihpomeh held at Camp John Marc near Meridian. John Marc is a great camp run by Vance and Karen Gilmore and their wonderful staff.
I want to give a special thanks to the Camp Ailihpomeh organizers and volunteers from the Texas NHF Chapters and treatment centers and all across the community who work so hard to make this such a fun week for the boys.
Here are some pics of Jack from the week.
The rest of the camp pics can be seen here
Let's try again
Well that was an inauspicious beginning. First post and then nothing, zippo, nada for three weeks. A lot has happened in three weeks and I'll try to post on the happenings.
Friday, July 6, 2007
Welcome
Hello! any and all. I hope this to be the first of many posts. In the near future I hope to figure out how best to go about doing this. I want to share my (our) story and hear from you. I suspect there will be disagreement in the future, but one thing I hope we can agree on is civility toward each other.
There. The blog is now started and time for me to get to work.
Thanks
There. The blog is now started and time for me to get to work.
Thanks
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