Christmas

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.

Merry Christmas!

Laurie Kelley December 20, 2010


Wishing all our readers, sponsors and beneficiaries wonderful holidays!

Holiday Time in New York City

Laurie Kelley December 13, 2010


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!

Laurie Kelley December 22, 2008

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

Do They Know It’s Christmas?

Laurie Kelley December 15, 2008


With Christmas coming, we always play a long iPod list of holiday songs. Our tastes run from traditional ones, like Bing Crosby’s “White Christmas,” Perry Como’s “O Holy Night” and Johnny Mathis’ “Christmas Song,” to Queen’s “Thank God It’s Christmas,” Elvis’ “Why Can’t Every Day Be Like Christmas?”, Run DMC’s “Christmas in Hollis,” and Sting’s “Gabriel’s Message.” But our favorite is “Do They Know It’s Christmas?” by Band-Aid.

You might recall this was a song written and recorded in 1984 by several top English and Irish recording artists to help raise money for famine relief in Africa. “The record was released on November 29, and went straight to No. 1 in the UK singles chart, outselling all the other records in the chart put together. It became the fastest- selling single of all time in the UK, selling a million copies in the first week alone. It stayed at No. 1 for five weeks, selling over three million copies and becoming easily the biggest-selling single of all time in the UK,” notes Wikepedia. The video can be seen on YouTube.

It’s a timeless song, about the timeless plight many African countries face. I think of it now as we try to help our hemophilia brothers in Zimbabwe, a country collapsing under economic duress. This is a beautiful country, filled with civil and peace-loving people, where literacy rate is 95% and which once served as the breadbasket of Africa. I was there a year ago at this time, and my visit has haunted me ever since.

Now, in addition to the highest inflation rate in the world, and 80% unemployment, it suffers a devastating cholera outbreak. Cholera is a killer; it is transmitted through food and water, and can claim a victim within 24-48 hours through dehydration. If you’ve watched CNN, you will see how the disease has spread. Total U.S. humanitarian assistance to Zimbabwe’s food and health crisis is more than $226 million since October 2007, but the disease continues. The UN has reported a total of 13,960 cholera cases with 774 deaths since August 2008, affecting all provinces in the country. The actual death rate is said to be even higher than this reported number.

In the midst of all this, how is hemophilia care faring? There is little food in the country, minimal health care, and no treatment for hemophilia. I am proud to say that the US is the number one aid donor to Zimbabwe, and likewise, Project SHARE is the number one donor of factor to Zimbabweans with hemophilia. And I’ll be the first to say this still isn’t saying much. The needs are deep. We are now sponsoring individuals in Zimbabwe, supplying factor and struggling to help Elton, an 18-year-old with a grotesquely swollen knee from repeated untreated bleeds. He is in danger of losing his leg, and even life, if we do not get him medical aid.

In the midst of everything–famine, disease, unemployment, devalued currency, no gas, no foreign exchange, little medicine—the Zimbabwe Haemophilia Association perseveres. When you think about our current economic situation in the US, take a moment and think about theirs. And they do not complain, but shoulder their burdens with grace. How do you celebrate Christmas when there is so much loss, and hopelessness? They will still celebrate. The almost amazing news to me is that they will hold their Annual General Meeting, in Harare, despite the outbreak and lack of food. Nothing seems to stop them! While our national hemophilia meeting overflows with money and give-aways, nice hotel rooms and so much food we throw most of it away, their meeting will be held at a hospital, in a bare room, with no food, filled with hungry people. hungry for medicine, food and hope.

Do they know it’s Christmas? They do, in the purest sense. Do we know? Christmas is a time of charity. That’s what gift giving is about. Please think to help those in Zimbabwe with a simple gift: $10 is a fortune to them. Let’s make a donation to their meeting, to provide food, travel money and maybe even some Christmas gifts… go to www.SaveOneLife.net and make a one-time donation to Zimbabwe, to our brothers with hemophilia, to let them know it’s Christmas.

Do They Know It’s Christmas? Band-Aid 1984

It’s Christmastime
There’s no need to be afraid
At Christmastime, we let in light and we banish shade
And in our world of plenty we can spread a smile of joy
Throw your arms around the world at Christmastime

But say a prayer

Pray for the other ones
At Christmastime it’s hard, but when you’re having fun
There’s a world outside your window
And it’s a world of dread and fear
Where the only water flowing is the bitter sting of tears
And the Christmas bells that ring there are the clanging chimes of doom
Well tonight thank God it’s them instead of you

And there won’t be snow in Africa this Christmastime
The greatest gift they’ll get this year is life
(Oooh) Where nothing ever grows
No rain nor rivers flow
Do they know it’s Christmastime at all?

(Here’s to you) raise a glass for everyone
(Here’s to them) underneath that burning sun
Do they know it’s Christmastime at all?

Feed the world
Feed the world
Feed the world

Let them know it’s Christmastime again

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