Merry Christmas!

Merry Christmas and happy and safe holidays! See you in the new year!

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.

Some Real Christmas Cheer

We got our white Christmas after all and are buried under snow here in the northeast!

And it was a beautiful Christmas in Puyallup, Washington, when students at Cascade Christian High School raised more than $13,000 to help their classmate with hemophilia.

Debbie Cafazzo, staff writer for The News Tribune wrote that Allenmykael Harlin-Gonzalez, 17, was hospitalized and needed their help. A bright young man with a 4.0 grade-point average and often in a wheelchair, Allenmykael, on November 24 incurred an infection in his hip joint, his body eventually going into septic shock.

Cafazzo writes that a member of Associated Student Body team said, “We thought and prayed about what we wanted to do.”

She continues, “Being teens, their thoughts naturally turned to social networking. That’s when Operation Bless Allenmykael was born on Facebook. Students started spreading the word through the school’s Facebook page that they were raising money for their classmate. At school, kids from elementary to high school age (Cascade Christian also includes a junior high and three elementary schools) dug into their pockets and piggy banks for spare change. One woman brought a check for $2,000 to the school office.

“Within a few weeks, the students had raised more than $13,000 in cash and gift cards. Someone also donated a motorized wheelchair for Allenmykael to use. Students are also hoping to be able to help in the future with a new van to replace the family’s sputtering 21-year-old vehicle.
‘I felt so blessed to be able to bless them and be part of something so big that God was doing,’ said Carder.”

Allenmykael was released from the hospital in time to spend Christmas home and with his family. Cafazzo quotes Cascade ASB President Stephen Mahnken: “A lot of people might think that we made their Christmas. But they really made ours.”

Allenmykael hopes for a career in medicine, and sets his sights on the prestigious Johns Hopkins University. If he succeeds, that would truly be the Christmas gift that keeps on giving.

Read more:

Great Book I Just Read
The War of the Worlds by H.G. Wells
It’s hardly Christmas fare, but this is a classic I have always wanted to read. And it was worth the wait. It’s the first book I have read on my new Kindle, and it was free!

This is a gripping and exciting story about the attempted overthrow of earth by Martians, written by the master of science fiction, in 1898. Given that it was written over 100 years ago, it’s astounding how Wells acutely and instinctively hones in on what happens when there is anarchy: What happens when a country, the most powerful on earth, is invaded? Who are the survivors? How would people behave? Wells’ story is broad: he delves into the science of microorganisms, astounding as even the germ theory had only just in the past 20 years been accepted, but even in 1889 Halsted, a leading US physician, didn’t believe they traveled by air! For Wells to apply that to a tale about invading Martians is sheer brilliance. It was also the industrial age and so machinery figures prominently, as the Martians clank their way through the countryside, destroying everything with their “Heat-Ray.” He explores Darwinian theory: why do the Martians have huge heads, no intestines or internal digestive organs, and why are their machines tripods that slither? He provides sound and fascinating explanations, while at the same time creating a page-turner story that will be hard to put down. He describes the breakdown of society at the hands of monsters who seek to exterminate a race, and this was before the World Wars. Wells was a genius, and a prophet. Read this before seeing either of the movies, both of which were good for different reasons. Four stars.

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 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!)

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