Blog Archive

Sunday, May 26, 2013

Celebrating Heroes Among Us

Laurie Kelley opens gala
Save One Life celebrated its third annual spring Gala at an elegant, waterfront venue, The Exchange, located at Boston's historic Fish Pier. Enjoying the balcony overlooking the ocean, or the expansive interior, about 120 guests from across the country dined on hors d'oeuvres and mingled. Guests represented the hemophilia community in full range, from pharmaceutical companies, to specialty pharmacies, from patients to families.

Neil Herson receives recognition from Martha Hopewell
I opened the evening at 7 pm welcoming our guests. I like to use very current events to weave into my talks, and found a metaphor to use in my opening: while getting ready for the gala, I dropped something on the floor. When I bent down, I happened to look under my bedroom bureau and amidst the dust bunnies and mounds of pet hair (my daughter overlooked this during her vacuuming chores), I found a shoe that had been missing for some time. It made me think that sometimes we have to go into the dark places, the not-so-glamorous places, even the dirty places where we'd rather not go to find the things we are missing or have lost. In our affluent society (and most of us are affluent compared to those we serve), we slowly and subtly can lose our compassion, tolerance, mission, and unconditional giving.

A slide show of the many faces of children and young adults from developing countries helped by Save One Life played in the background during the three hour gala, showing some of those unglamorous places--megaslums, rural villages, hamlets, townships. It also showed the faces of suffering.

We thanked our sponsors of the event, donors, and presented Donor of the Year award to Rich Gaton and his company, BDI Pharma, who sponsor 17 children. Special recognition was given to Patrick Schmidt, CEO of FFF Enterprises (88 children), Wolfgang Marguerre, chairman of Octapharma (70 children), and Neil Herson, president of ASD Healthcare (50 children). Only Neil was present from Texas that night.

Usha accepts award from Tricia Sico
We had special guests present: Usha Parthasarathy and her husband from India. Usha is our volunteer liaison, and we simply would not have an Indian program without her. We have over 500 beneficiaries just in India and Usha maintains updates on them all! She received a surprise award for her dedication. And she accepted Program Partner of the Year award on behalf of the Kunnamkulam Chapter in India.

A special award was also given to Barry Haarde, a 47-year-old Texan with hemophilia and HIV who had just concluded his second Ride Across America that afternoon, at 3 pm in Salisbury, Massachusetts! Such dedication! Barry averaged over 100 miles a day to raise $35,000 for Save One Life. Barry also dedicated each day of his ride to someone who passed away from hemophilia and HIV, and posted their photos on Facebook. Remarkable thoughtfulness!

Our Inspiration Award went to board member Chris Bombardier, a 27-year-old who has summit both Kilimanjaro and Aconcagua, highest peaks on their continents, becoming the first American with hemophilia on Kili, and the first person with hemophilia ever to summit Aconcagua. We were blessed to have both men in our midst Thursday night.
Laurie with local patients Justin Levesque and
Mark Zatyrka (of AHF, and former board member)

Thanks to everyone who attended this wonderful event! We raised money to help support our great team, Martha Hopewell (executive directer), Tricia Sico (program director) and Michelle Higson (executive assistant). Without them, we could not operate or progress; with them, we have progressed so far!

We have more children waiting for sponsorship. Please visit www.saveonelife.net to learn more! (More gala pics to come!)




Interesting Book I am Reading
All That You Can't Leave Behind: A Rookie Missionary's Life in Africa by Ryan Murphy [Kindle]

This might be a good first book for someone c
ontemplating becoming a missionary in Africa. It's an interesting first look at the culture shock one can experience. It's also interesting what drove Ryan and his wife and new baby to ell everything they owned, beg for survival funds, and leave to a difficult place to teach the schoolchildren of other missionaries. For the experienced, this book is much too fluffy, superficial and lacking in depth, history. It's told in a rambling, blog-style or journal-style, which might appeal to the younger generation. Not bad, but not meaty or deep; it's a quick read, too. Two/five stars.








Sunday, May 19, 2013

The Bloody Wars: When War Advanced Blood Transfusion


Dr. Norman Bethune

Scientists and physicians in the warring nations during World War II struggled to save soldiers bleeding to death on the battlefield. Dragging injured soldiers back to field hospitals resulted in too many lost lives. But what other alternative was there?

One of the early medical innovators of mobile blood transfusions was Dr. Norman Bethune, a Canadian surgeon, who wondered: why risk men’s lives by bringing them back to hospital when blood should travel to them? Funded by an organization, he went to Madrid at the outset of the Spanish Civil War in 1936, where he developed a mobile blood transfusion service. With charismatic enthusiasm and caring, he wrote: “This is great! Isn’t it grand to be needed, to be wanted!” He had a high proclivity to risk-taking and civil duty: he was involved in the war-time evacuation of families and children. He was always concerned with the socioeconomic consequences of medical services on the plight of the poor, and pushed for socialized medicine.

In Spain, he seized on this innovative idea: to take the blood donated by civilians in bottles to wounded soldiers near the front lines. Being highly adaptable and effective, Bethune's service is regarded as one of the most significant military-medical achievements of the Spanish Civil War. A benchmark in the history of mobile medical achievements, his work later inspired MASH units.

This was not the first time this idea was proposed, but it was far reaching. A similar service had been established in Barcelona by a Spanish hematologist, Dr. Frederic Duran-Jorda, and had been functioning just months before.







The more precise and cautious physician, Duran-Jorda ran a sophisticated operation in Barcelona. He collected only O blood; oxygenated the bottles; and ensured high standards of safety by testing rigorously. He had vehicles fitted with refrigerators to transport the blood to front line hospitals. In February 1939, Duran-Jorda fled to England, where he helped the British develop their blood banks for the front line.

And the Germans, who had practiced the highest level of medical research in the world, regressed into medical myth when the Nazis came to power. Blood now represented racial purity—with the belief that only pure German blood could be used in German soldiers to save their lives. This would cost the Germans thousands of lives. 

Fantastic Book I Just Read
Wind, Sand and Stars by Antoine de Saint-Exupery

I had long heard that this story was a classic in travel reading. The story of Saint-Exupery's flights over Africa as a mail carrier for the French postal service, Aeropostale in the 1930s. Told in the first-person voice, Saint-Exupery shares his views from the airplane seat, and from his fertile mind. The text is lyrical, mesmerizing, fluid. An adventurer, he writes: "The call that stirred you must torment all men. Whether we dub it sacrifice, or poetry, or adventure, it is always the same voice that calls. But domestic security has succeeded in crushing out that part in us that is capable of heeding the call. We scarcely quiver; we beat our wings once or twice and fall back into our barnyard." His crash and struggle to survive in the Sahara is riveting. A rousing five/five stars. Read it!

Tuesday, May 14, 2013

Mix It Up: New Device for NovoSeven RT Users

Here's a press release about a new reconstitution device from Novo Nordisk. It's very cool that the idea originated with the Novo Nordisk's Consumer Council, which I used to facilitate (and miss! great times):



Novo Nordisk is pleased to announce the introduction of a new reconstitution device for NovoSeven® RT (Coagulation Factor VIIa [Recombinant]). Beginning on May 1, 2013, NovoSeven® RT with MixPro™ will replace the current NovoSeven® RT and will be available to congenital hemophilia A or B patients with inhibitors, acquired hemophilia, and congenital factor VII deficiency.

Although the product will remain the same, NovoSeven® RT with MixPro™ will now include a syringe prefilled with diluent and a vial adaptor to reduce the number of steps needed to prepare NovoSeven® RT for infusion. This is expected to assist NovoSeven® RT patients and their caregivers. Previously, the NovoSeven® RT package included two vials, one containing the active drug substance as a lyophilized powder and the other containing diluent, requiring two additional steps for reconstitution.


This enhancement was developed in response to suggestions from the Novo Nordisk Consumer Council, which comprises bleeding disorder community members. NovoSeven® RT with MixPro™ received approval from the U.S. Food and Drug Administration in October 2012.


It is important to note that although the MixPro™ prefilled diluent syringe uses a standard luer-lock connector, not every needle-free IV system is compatible with glass prefilled syringes like MixPro™. If you are a health care professional with questions, please contact Novo Nordisk Medical Information at 1-877-NOVO777 for assistance and compatibility information. All others should contact a health care professional with questions.


For more infom visit www.novosevenrt.com http://www.novosevenrt.com



Sunday, May 05, 2013

Stop the Bleeding!

Hemophilia is nothing to laugh at. But if you are Patrick Lynch, a young, hip charmer with factor VIII deficiency, you can sure try.
For the past 18 months, Patrick has been creating a pilot series to bring humor and education to patients and families with hemophilia. Only 27, he’s currently executive producer at Believe Digital (believedigi.com) and has a list of accomplishments as an actor, writer, and producer. He lives  in Brooklyn, New York. You can read more about him on his web page: http://patrickjameslynch.com/about-me/

So check out Stop the Bleeding! (STB!) http://www.youtube.com/watch?v=wgXLzu3cVto&list=PLr0kMnCzgqJp25U_pmYo4UjkITKVX2qFF 

I had a chance to meet Patrick at our insurance symposium Pulse on the Road in Albany earlier this year, and was intrigued by his marrying humor and hemophilia. The first to do this? Nope. That credit goes to the affable and lovable Brian Kraft, a stand-up comedian who had wickedly funny routines about having hemophilia. Sadly, Brian succumbed to co-infections many years ago. Until his passing, we’ve been rather... serious about hemophilia.

You can subscribe to Patrick's YouTube channel. Already, in the first 30 days, STB! has had  178,108 minutes watched on YouTube,  97,000+ views on Facebook, and 1,000+ likes, shares, and comments.

These first videos were sponsored through an unrestricted charitable donation from Baxter.  Patrick is currently seeking grants and charitable donations from a variety of sources for additional videos this year. We wish him luck! And keep the laughs coming.

Anyone else think Patrick looks a little like James Franco? Not a bad thing. Maybe he will host the Oscars one day...

Great Book I Just Read

Dark Tide: The Great Boston Molasses Flood of 1919 by Stephen Puleo [Kindle]


The riveting and tragic story of one of the great disasters in Boston history. Sad timing reading this, coming after the new Boston massacre just two weeks ago.  Puleo does a superb job of building a suspenseful story of a disaster that only lasted minutes, but changed the politics and policies of Massachusetts, and the country’s building codes, forever. Molasses at one time was a thriving economic commodity, contributing to the slave trade in the south and the national war machine to fight a rising Germany. United States Industrial Alcohol (USIA) was the epitome of a corporation pushing profits to the extreme, and cutting corners to get there. In the crowded North End, home to poor Italian immigrants and apparently “anarchists” trying to sabotage big business and keep the US out of the war, USIA placed a 2.5 million gallon vat for molasses. When disasters struck on January 15, 1919, snuffing out the lives of 20 people who suffocated under the wave of molasses, the largest civil lawsuit in MA history was launched to determine the cause. You will learn an astonishing amount of history, economics, politics and engineering, all interwoven, in this gem of a book. Kudos to Puleo; extremely engaging and well written book, and most Bostonians have never even heard of this amazing event, and need to. Five/five stars.
 
Bayer