Christmas

Hemophilia Leadership: Jesus’s Example

Christmas is celebrated this week, and has me thinking of leadership. I have worked with many emerging leaders in the international hemophilia community, who are volunteering to help their country’s people with hemophilia. It’s a daunting task: these volunteers are typically mothers or fathers who struggle daily to make ends meet, and raise with a child with hemophilia without factor. To take on the mantle of leadership, and the challenge of forming a nonprofit without experience, money, resources or even much time, is sheer bravery. We here in the US cannot even begin to imagine their daily lives. Every step is hardship.
Caravaggio’s Adoration of the Child, in the Uffizi Gallery, Florence, Italy

I sometimes think of the example of Jesus when I approach new leaders, or try to inspire new leaders. Jesus was born into poverty too. He had no earthly resources. He wasn’t trained to be a leader–he was a carpenter. He saw the suffering around him; indeed, his very birth triggered the “Slaughter of the Innocents.” Imagine knowing that fact as you are growing up. He was gifted with the ability to heal. And he had to sacrifice much: leave his mother and father, travel far from home, find disciples, spread his message without any use of newspapers, radio or cell phone. No slogans, no banners, no World Jesus Day. It all came down to him.

Our leaders in Africa, South America and Asia also face much sacrifice and struggle; they need to find disciples; they need to educate the masses. On top of it they have a child with a painful and life-threatening disorder. But these Hemophilia Leaders follow the same style of leadership that Jesus exemplified. They are–or should be–servant leaders.

A servant leader puts the needs of his people over his own desire for control, power, acquisition, or ego. He is attuned to the needs of his people, and seeks to meet them. In hemophilia, this means helping find those who suffer, putting them in touch with a treatment center, educating them about their disorder, and above all, getting them factor.

So in a way, Hemophilia Leaders can “heal”: they learn who to reach out to (doctors, WFH, Project SHARE) for help, for factor. I’ve witnessed so many amazing leaders, some young, some beyond retirement, dedicate every minute of their free time to helping the suffering in their countries. And this while they themselves often need help. Imagine a Hemophilia Leader contacting us at Project SHARE, while they themselves are in pain from a bleed, requesting help for one of their patients. That’s servant leadership.

They are stoic, strong, driven with an inner passion, rise above their own pain and suffering, and above all things, have faith. Faith and trust that someone will help them, that they can change the situation in their countries to make it better for a new generation. Faith in themselves, because they often believe in a higher power helping them, whether a deity or an organization, or both! They have a vision that compels them. They are driven and dedicated. Meditating on this at Christmas, I am in awe of these Hemophilia Leaders–patients, parents, doctors–and I cannot wait to serve them in 2015. What a gift they are to us at Christmas time and throughout the year.

Book I Just Read
Jesus, CEO
Laurie Beth Jones 1995

What skills, attributes and style did Jesus possess that made him a success and a “fisher of men” that leaders today can emulate? That’s the goal of this book, broken down into easy-to-read chapters that pose personal questions to consider at the end of each. The book may be good for leadership novices, but lacks a sharp, in-depth comparison of Jesus’s life and skills compared to those of a modern-day business person (such as provided by Margaret Morrell in Shackleton’s Way). This is a superficial, often trite comparison of Jesus’s skills, mindset and style to modern day leaders. Some are stunningly obvious: He planned. He formed a team. He had a vision. He expressed himself. He forgave them. Simplistic, and questionable at times. (“He came from left field.” “God surprised people.” What? I thought his coming was prophesied, like for centuries?)
There are much better books on Jesus and leadership. Try John Maxwell’s books on leadership and skip this outdated one. It still sells for $10 on Amazon! One/five stars.


Merry Christmas! (disease)

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.

Merry Christmas!


Wishing all our readers, sponsors and beneficiaries wonderful holidays!

Holiday Time in New York City


I was honored to attend the New York City Chapter’s annual meeting and holiday party. This is a relatively new chapter and wow, have they come out strong and swinging! No wonder with people like Shari Bender and Melissa Penn at the helm.

Dr. Christopher Walsh was the first speaker and gave an informative talk about new developments in hemophilia treatment. Dr. Walsh is director of the Hemophilia Treatment Center at Mt. Sinai Medical Center and a gene therapy expert. It was a relief to hear that there are viable gene therapy trials still ongoing, though to most of us, these have been overshadowed by trials for long-acting factor. I can tell you that many families are not even aware that gene therapy trials are still happening.

Dr. Walsh said, “It’s incredible how many companies are working on treatments for hemophilia.” Treatment will get better, he added. His talk covered regular hemophilia, inhibitors, and treatment for hepatitis C, still a devastating disease for those who contracted it in the 1980s. Dr. Walsh stressed that with abundant treatment and excellent health care in this country that “Bleeding is not an option.” He recommended that people check out www.clinicaltrials.gov for more information about gene therapy and trials on long acting factor and other treatment developments.

I presented the work done by Save One Life and how we support over 650 children and adults with hemophilia in poverty in 11 countries around the world. In this world, bleeding is the only option due to lack of treatment, which we are trying to ease by weekly factor donations to 50 countries. In response to my talk, the NYC Hemophilia Chapter passed around a container and we raised $373 on the spot! This is more than enough to support Nitish, a young man with hemophilia who lives in poverty in Nepal and whom the Chapter sponsors. Many people also kindly brought vitamins for me to bring on my next journey overseas, as many children become anemic from frequent and untreated bleeds.(Photo: friends Kathy Didier of Octapharma and Kim Phelan of Coalition for Hemophilia B)

The highlight of the day was a visit by Santa Claus, who distributed gifts to all the kids.

Congratulations to the NYC Hemophilia Chapter for its great advocacy and community work, and I thank them for allowing me to share in the celebration. New York City–one of our nation’s greatest–and the New York City Hemophilia Chapter–strong and young, looking to transform the lives of many, here at home, and in far away lands.

(Photo: Bleeding Disorder Resource Network displays Save One Life brochures, and sponsors 20 children!)

Happy holidays!

Wishing you Merry Christmas, Happy Hanukkah and a happy new year!

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