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.

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

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.

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.

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:

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.

Happy Halloween !!

Hope it's a fun and safe night for all.

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 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.

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:

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).

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

"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.

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.

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:

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.

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:

"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

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

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.

So ya better hurry! As of this post only 3 days left on the auction.

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

That's why I don't bet on sports. Whoda thunk it. Impressive start by the U.S. side going up 5 1/2 to 1/2. Tiger and CHIII held off Choi and Tiger's own recent match-play nemesis, Nick O'Hern. Big kudos to Glover/Verplank for their impressive win over the formidable team of Appleby/Goosen.

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.