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Wanted: Leaders!

Laurie Kelley February 6, 2012

You may have heard that the hemophilia community is a bit worried about developing leaders. Our generation is getting “old,” and has fought our many battles, and continue to fight on the insurance front. We need young people with talent, ambition, compassion and vision to carry the torch in the future.

But are we victims of our own success?

We’ve made life good for the new generation of kids with hemophilia, and as expected, they are having good lives–and disappearing from our radar screen. We need them to come back, to pitch in, to help, to lead.

To address this, Bayer developed a unique program in our community to train young people to think about careers in hemophilia, or at the very least, to give back through volunteering. Bayer HealthCare offers the Bayer Hemophilia Leadership Development Program (BHLDP), and expanded it this year by adding a community element to the internship experience. The 2012 interns selected to participate in this prestigious program will spend five weeks of the eight-week program at a local hemophilia organization.

The company is currently seeking applicants who are attending college and have been touched by hemophilia. Those interested have until Monday, March 12th to apply for the program, which runs from June 18th-August 9th. Participating interns will engage in leadership training, hands on business projects, marketing and communications strategies, and help support the local hemophilia community. Additional details and the application can be found at
www.livingbeyondhemophilia.com/intern.

Of the many organizations that applied to participate, four chapters were chosen to mentor and manage an intern. They are the Arizona Hemophilia Association, Bleeding Disorders Alliance Illinois, Hemophilia Foundation of Upstate New York – Rochester and Texas Central Hemophilia Association.

The 2012 program begins with a two-week orientation at Bayer HealthCare’s U.S. headquarters in Wayne, NJ, where the interns will receive training on communications, problem solving and leadership skills as well as work with people in a number of departments to gain insights into how various parts of the company operate. Interns will spend the following five weeks at the selected hemophilia organization, where they will gain first-hand knowledge about the work done on a local level and engage in projects building on the skills developed earlier in the program. During the final week at Bayer, the interns will report on their experience and present a project developed with their local chapter.

Bayer established the Hemophilia Leadership Development Program in 2007. Since that time, many program participants have become more active hemophilia advocates and have gone on to careers serving the community, government and industry.

This is a fantastic opportunity. If you know of a young person with hemophilia who has leadership potential, please have them apply today!

Great Book I Just Read
The Killer of Little Shepherds: A True Crime Story and the Birth of Forensic Science by Douglas Starr (Kindle edition)

Starr never fails to engage. From 1894 until 1897 in the countryside of France, Joseph Vacher, a vagabond and discharged military enlistee, began a bizarre killing spree, from young women to little shepherd boys. Dispatching his victims rapidly, mutilating or violating them, and moving on immediately, he became a killing machine that terrorized France and baffled police. Forensic science was nearly nonexistent, and police imprisoned innocent people based on hearsay. Meanwhile, Dr. Alexandre Lacassagne, France’s leading expert in legal medicine and professor at the University of Lyon, dedicated himself to the case and in the process advanced forensic science. Ultimately, this became one of the first cases of determining what is legal insanity, as Vacher, once apprehended, became his own counsel in effect and pushed to be declared insane. A battle ensues between Vacher and Lacassagne, which would have repercussions for decades to come. Fantastic story, well written, and enlightening. Four/five stars.

What on earth are you doing for heaven’s sake?

Laurie Kelley January 30, 2012

Remember this slogan? It was found on bumper stickers in the 70s, from what I recall. Maybe this was my first attempt at editing: were they trying to say, “What on earth are you doing, for heaven’s sake?” Like, “Are you crazy or something?” Or maybe, “What on earth are you doing for Heaven’s sake?” as in, what’s your purpose here on earth before you go to Nirvana, Heaven or get reincarnated as an insect?

I thought of this bumper sticker when I read the essay submitted to me by friend and colleague Adriana Hendersen. She is a one-woman agent for change in Romania, and has changed the lives of dozens of boys forever. This is excerpted from the November issue of my newsletter PEN. In case you missed it, read on…

Why Am I Here?

“Why are we here?” is a philosophical question concerning the purpose of life.

“I have asked myself many times why I am here, but with the emphasis on here, in the US.

“In 1970, I seemed destined for a different life, in Romania. My father was sentenced to spend his life in a communist prison for criticizing the government’s decision to deny the family the right to emigrate; and we, his children, were supposed to be sent to reeducation school. But we didn’t know that our situation had been receiving international attention. Following pressure from the United Nations and various churches, the Romanian government asked us to leave Romania immediately. It was a magnificent, magical, miraculous exit. We were the first family in Romania to leave legally, not only with a passport for emigrants, but also carrying an American green card.

“As a young girl I never once looked back, or even thought about what I had left behind. I thought I would forget Romania, and hoped I would forgive. I pursued everything the US offered: freedom and opportunity. I had a wonderful family, a big house in the suburb, cars, trips around the world, a closet full of designer clothes. Most important, my family was healthy. Yet it felt like something was missing.

“When the Iron Curtain fell in 1989 and images of the harsh realities in Romania besieged the world, I could not ignore my country and people anymore. The question “why am I here” started to nag me.

“As a child, all I could think of was survival. Now, with my newfound freedom came a desire to succeed. When success wasn’t enough, I started to look for significance. I wanted to give back, to make a difference, to acknowledge the blessings that were bestowed on me and possibly see if there was a reason for my being here.

“I was at a loss about what I could do, and for years I looked for some cause I could identify with. Then I met a woman who was looking for medicine to help a boy with hemophilia in Romania; he needed corrective foot surgery to walk. I barely knew anything about hemophilia, and the little I knew was mostly inaccurate. After a quick and shocking lesson on hemophilia, I began a quest to find the miracle medicine. It wasn’t easy, and the more I searched, the more I lost hope. I made hundreds of phone calls, all over the world, trying to source any kind of donation. It was a test of endurance and tenacity. I had one phone call left to make, the call to Project SHARE. They immediately shipped the factor, and the rest is history. That was more than 10 years ago.

“Since then, I know why I am here. The boy had surgery and his wish was granted: he is now walking. That’s when S.T.A.R. (Start Thinking About Romanian) Children Relief was born. S.T.A.R. is a multipurpose organization with an emphasis on healthcare and a focus on blood disorders. Through S.T.A.R.’s efforts and donated factor concentrate, many Romanian boys and adults with hemophilia have had their lives improved or spared. On World Hemophilia Day, April 17, 2004, S.T.A.R. organized the first-ever hemophilia symposium in Romania. And S.T.A.R. organizes and hosts Camp Ray of Hope, in its sixth consecutive year this past summer, the only camp for children with hemophilia in Romania.

“S.T.A.R. is also Save One Life’s partner for Romania. We have 59 children and adults with hemophilia sponsored through Save One Life. I know most of the beneficiaries personally, and have visited them at home or seen them at camp where they play with carefree enjoyment. I get to see them smile and hear them laugh. It feels awesome to be so intimately and personally involved.

“I never thought I would be involved in charity or volunteer work. I don’t have the personality. I am shy, withdrawn, introverted, not the type that would organize international conferences and fundraise for summer camps. It’s said that we, in the nonprofit world, change other people’s lives. That’s true, but in the process, our lives change too. We have a purpose, our life has meaning, we do things we thought we could never do. That’s a terrific feeling! We give a little, but we get a lot back.

“I know—Romania is close to my heart, and I have a vested interest in helping my people. But to anyone who, like me, is searching and wondering if there is something more than just the fleeting pleasures in life: if you want to make a difference or improve a life, while you improve your own, consider sponsoring a child. Look at the Save One Life website, where many with hemophilia are waiting to be sponsored. Pick a country, pick a child. Put a sparkle in those eyes that look so hauntingly and sadly at the lens. Bring a smile and a chance for a better life. It’s a small gesture that will bring priceless rewards.
I know why I am here. Do you?”

Maybe the bumper sticker needs to simply say: “I know why I am here. Do you?”

Adriana Henderson is founder and president of S.T.A.R. Children Relief, a nonprofit dedicated to helping Romanian children in need. She was born in Romania and immigrated to the US, where she has lived for the past 40 years. She is a graduate of UCLA, and lives in North Carolina with her husband Tom, who often helps with her charitable work. They have two daughters. Visit www.starchildrenrelief.org

So Long! Extended Haf-Life Factor Sets the Stage

Laurie Kelley January 23, 2012

You’ve probably heard about Biogen Idec’s clinical studies of factor with extended half-lives. They aren’t the only ones investigating. CSL Behring just announced that they are starting a global phase II/III, multi-center study to assess the safety, efficacy and pharmacokinetics of recombinant fusion protein.

This recombinant fusion protein links coagulation factor IX with recombinant albumin, called “rIX-FP.” rIX-FP is indicated for the prophylaxis and treatment of bleeding episodes in patients with factor IX deficiency.

Of course, extended half-life factor means potentially fewer injections for patients, and may enable or enhance prophylactic treatment, improving quality of life for patients.

So many patients worldwide have been hoping for gene therapy–a “cure”–but it seems that the next great thing that will come along just might be extended half-life factor. We’re not sure yet which company will deliver first, but keep watching. These are exciting times and the long acting factor race is on!

Book I Just Read
The Hunger Games by Suzanne Collins

This best selling novel takes place in post-apocalyptic America, now called–for no reason disclosed– Panem. In fact, there are a lot of things that happen for no apparent reason in this book. Quick synopsis: the powers that be dictate that one teen from every district must compete to the death in the Hunger Games, in retribution for an uprising that happened a long time ago. To the victor goes fame and food to their district. The whole event is televised–reality TV where kids get killed. The heroine narrates the story, and has a pretty flat tone throughout. Think “The Truman Show” meets “Mad Max Beyond Thunderdome” meets The Olympics meets “Rollerball” and you get a great idea what the book is about. It’s not terribly original; the writing is mediocre and the story pretty predictable, characters shallow with no depth of thought or emotion. After killing her first kid, arrow through the throat, the 16-year-old narrator with the flat affect seems more concerned about whether the boy she is with loves her. Someone recommended this to me, but neglected to tell me it’s teen romance fiction, with a lot of killing. Read it if you want to kill time; it’s a few steps up from a comic book. If you want fantasy with substance and depth, try Tolkein. The book seems to be meant for a movie, and reads like a screenplay; I somehow think the movie will be better as a result, coming in March. Two stars/five.

Factor: Lost in Space

Laurie Kelley January 16, 2012

My friend and colleague, Richard Atwood, is somehow always able to muster up some amazing research on hemophilia. Here’s one I bet you never heard of…. “Space AHF: A Treatment of Hemophilia.”

Richard writes: “In 1981, Frank Schnabel, President of the World Federation of Hemophilia in Montreal, Quebec, Canada, reported on a letter sent by Dr. Weiss at McDonnell-Douglas. The company had developed facilities to reproduce certain medicines in space that could not be perfectly produced on earth. The space environment was characterized by weightlessness, vacuum, isolation, and almost no thermal convection.

“McDonnell-Douglas conducted a feasibility study exploring the potential production in space of anti-hemophilic factor VIII. Blood products could be improved by removal of noxious contaminates using electrophoresis (CFE). The space electrophoresis process allowed continuous purification and collection of plasma proteins, thus reducing total blood needs and increasing quantities of biological materials available for treatment. The extraneous protein in commercially available AHF could be removed and the amount of AHF processed in space was not limited as it was at ground level. The electrophoresis hardware was scheduled to be tested on a shuttle Spacelab flight in early 1983.”

Well, that was then, this is now. We have terrific products that help our hemophilia patients stop bleeding instantly. Back in 1981, there were a limited number of products, no recombinant, and of course, a deadly virus about to strike.

I just visited last week the Titan II Missile Museum, and had a close-up look at the very last Titan missile (minus the nuclear warhead) in its silo, which got me thinking about all things space. We have exciting new hemophilia products coming down the road, and it’s unlikely any will be produced in space!

Reference: Schnabel F., 1981 Introduction: The promise and potential of the eighties. Haemostasis 10 (Suppl 1): 109-11.

Great Book I Just Read
Soul of a New Machine by Tracy Kidder (hardcopy)

This was a great compliment after having just read Steve Jobs. In 1978, super and mini-computers were the mainstay of the aerospace and defense industry; there was no such thing as a “personal computer” (microcomputer) or laptop. This book, for which author Tracy Kidder won a Pulitzer Prize, chronicles, like a great novel, the development of a 32-bit mini-computer Eclipse, that would be the fastest on the market. With the gruff and brittle Tom West at the helm of an almost secret Data General crew working on a project code-named “Eagle,” this is an insider’s look at project development, the birth of a new computer. You feel the tension, the sacrifices, the work ethic; it is agonizing. This is back when high-tech workers could say “I’m not in it for the money,” and would freely work 80-hour weeks, so devoted to their craft are they. The section where the team is debugging the computer takes you through their seemingly endless nights—and nightmares. The book is dated for sure, and goes into more detail than you could ever want about how computers work, but it truly is fascinating! How far we have come. You watch as these men almost self-destruct in their heroic efforts, and now we take for granted the ease and simplicity of our laptops and wireless creations. This all takes place in Westborough, Mass., a place I know well, as I worked not far from it in the mid-1980s. Tom West, the enigmatic project leader, just died in May 2011, and though he was reclusive, is immortalized in this gripping book. Four/five stars.

Merry Christmas! (disease)

Laurie Kelley December 26, 2011

I wish everyone a Merry Christmas and joyous new year.

Christmas reminds me that factor IX deficiency is also known as “Christmas disease.” Did you know that the name has nothing to do with the holiday?

The name comes from the first person properly diagnosed with factor IX deficiency, a Mr. Stephen Christmas, born a British citizen in 1947, who emigrated with his family to Canada. He was diagnosed at age 2 with hemophilia (no type yet). On a return visit to England in 1952 Stephen was diagnosed by the Oxford Haemophilia Centre as not having a normal case of hemophilia. Research led to a new classification, called factor IX due to the low levels or absence of factor IX protein in the blood. This eventually led to many others being properly diagnosed. Although Stephen later contracted HIV, he became an advocate for the screening of donated blood to increase the safety of transfusions and infusions.

And he went down in history: the new disorder was named after him!

Interesting Book I Just Read
I, Steve: Steve Jobs in His Own Words
George Beahm

I was too intimidated at first to read the new Steve Jobs book by Walter Issacson, so I settled for a short and sweet book. Well, it’s short! It is a collection of quotations by Steve Jobs, about business and life. It’s nice in that it’s a quick read, and you can go back and browse through it. Many of the quotations seem to be space fillers, and trite, shedding no light on Jobs or on anything! But some of it is good. I suspect you could get a lot of this on line, and save a few bucks.

Also, I finally finished Steve Jobs, which I will write about next week, and it makes I, Steve present Jobs as a savvy and wise man, sugar-coated all the way. To know the real Steve Jobs, read the Issacson book. For snippets, this is fine. Two stars/five.