A Christmas Carol

Summiting to Save Lives!

March is Hemophilia Awareness month! But you already knew that.
What you might not know is that a brave young Denver man with hemophilia is making

Chris climbing Denali (Mt. McKinley)
history.
Chris Bombardier is doing something no one with hemophilia has ever done before: summiting Carstensz Pyramid in Indonesia.
Why this mountain? After all, the man lives in Denver, a mile-high city. (Yes, he has that to his advantage; lots of extra red blood cells to help with altitude). Carstensz Pyramid will be Chris’s fifth mountain in his goal is to become the first person with hemophilia to climb the highest peak on each continent, aka The Seven Summits.
Mt. Kilimanjaro in Africa. Mt. Elbrus in Russia. Mt. Aconcagua in South America, and Mt. McKinley in the US: been there, done that for Chris.

This will be  his most technical climb yet–that means hard!  Carstensz Pyramid is the highest mountain in Oceania standing at 16,024 feet above sea level. The mountain is in a remote area of Papua, Indonesia and the climb will involve specialized skills such as rock climbing, rappelling, and a tyrolean traverse. Chris will end the climb with a 4-5 day trek through an isolated region of the Papua jungle.

And he asked me to come with him, mentioning there were a lot of leeches and snakes in those there “isolated regions.” I wanted to go, believe me. One day I will go with him (though we are now narrowed down to Antarctica and Mt. Everest. I have to remind him I am twice his age), if only to base camp.

Chris infusing on a mountain top!

Chris left Friday, March 6 and has just landed in Bali. He is psyched and raring to go!

You can follow him for the next three weeks on his blog: AdventuresOfAHemophiliac.com

Quick background: The Seven Summits Quest began when Chris traveled to Kenya on a work-related trip. While there, he witnessed the difficulties of those living with hemophilia in less developed regions of the world and decided he wanted to do anything he could to help. Chris declares, “Of course I look forward to standing on the summits of these incredible mountains and feeling the accomplishment of doing it with hemophilia. I want to show young people with hemophilia what’s possible. Our world is an amazing place, and I don’t want people with hemophilia to think they have to live in a bubble. I want them to get out and experience life to the fullest!” But, more importantly, Chris is committed to spreading the word about hemophilia and raising people’s awareness of the huge disparity in care that exists in the world.
And I add proudly that Chris is a board member of Save One Life, the nonprofit I founded in 2001 to help support the world’s poor with hemophilia. We have about 1,400 children and young adults

enrolled, who receive direct funding, scholarships, camp funding and microenterprise grants!

Deepak Das of India, whose leg was amputated last year due to an untreated bleed

And in March, Chris is going to dedicate each day to a child in need. Our goal is to get 35 more sponsored. They are waiting on our website: http://www.saveonelife.net

Chris is taking risks at great expense to highlight the need of those in impoverished countries, where factor is limited or nonexistent. Please help support his climb by sponsoring a child today!
http://www.prweb.com/releases/2015/03/prweb12565783.htm

Meet You in St. Louie?

Many of you might know we have more than one national hemophilia organization. Most people around the world know National Hemophilia Foundation (NHF), which has been around for 60+ years.  But we also have Hemophilia Federation of America (HFA), founded during a crisis time, when at the grassroots level part of our community felt their needs were not being met. From a small group of interested consumers, it has grown to become a national grassroots organization with advocacy at its heart. I like its messaging and style: simple, direct, and proactive.
Since its founding, it has held annual meetings, well timed to occur opposite in the calendar to NHF’s meetings. The next one is in St. Louis March 26-28.
The meetings are much smaller than that of NHF, and so actually gives you a chance to mingle and meet so many people in a less formal atmosphere. I haven’t been to many, as I am usually traveling to Africa or Asia at that time (while the weather is cooler there!) but the symposia I have attended have always been causal, informative, and fun.
Try to go if you can! And check out HFA’s many programs and offerings. It has an excellent website!
For info: www.hemophiliafed.org

Great Book I Just Read

To Live is to Die: The Life and Death of Metallica’s Cliff Burton [Kindle]

Joel McIver
The incredible and mesmerizing story of a bass guitar legend who helped establish one of the first “thrash” heavy metal bands, Metallica. Cliff Burton was only 24 when he died in a tour bus crash in Sweden, when Metallica was just becoming famous. Burton was dedicated to bass guitar from an early age, mastered it like no other and experimented with it on stage in a way no other had done (listen to his lead in on “Anesthesia”). He was in many ways the soul of the band. With his jean jacket and bell-bottom denims, he didn’t fit the mold of thrash metal,  staying true to who he was at heart: a quiet, intense and musically talented young man. He brought Bach into heavy metal, helping to give Metallica its unique sound. His death left a permanent scar on the band. This is a well written, in-depth account of Burton, almost a memorial to a man who would have risen to great musical heights, but whose work is preserved forever in albums like “Kill ’em All” and the incomparable “Master of Puppets.” Four/five stars.

LA Kelley Communications Origins: Part 2 PEN is born!

Laurie Kelley and Mary Ann Barth 1994

I thought my life’s work was complete at age 33 when my book Raising a
Child
was published. It took eight solid months of grinding work, not
helped by the fact that there was no Internet, or decent word processing software
in 1990. I actually had one of the first Apple computers, with a whopping 128 MB
of memory!** And now I had a full-time job as an economist, a three year old
with hemophilia and a darling newborn daughter!

Laurie Kelley and Mary Ann Barth reunite at NHF in 2014

But life had other plans. A mom from North Carolina, Sybil, wrote to me (and I mean wrote, like a paper letter; no emails for us then!) a wish: wouldn’t it be nice if we could somehow keep the exchange of parental stories going? Like in the book, which included the quotes of 120 different families with hemophilia. It was the first time in history that families with hemophilia could read all about their disorder and share in the experiences of other families.

Sybil thought a newsletter could keep the stories going. Great idea. But how?

At the same time, a woman named Mary Ann Barth, a cofounder of Quantum Health Resources, the homecare
company that shipped my son’s factor, got a copy of my book. She like it so
much she called me and asked if Quantum could support some initiative of mine. Perhaps
another book? Of course, Quantum wanted to put its name and logo on such a book,
the way Armour Pharmaceutical did. And why not? These companies paid for the research, writing and publication. We then gave away the book. No royalties; no one profited. All the companies asked for
was to have their logos on the covers as an acknowledgement.
I’m a businessperson, and I got it. It made sense. Like Nikon sponsoring the Olympics. Happens all the
time.
I suggested a newsletter to Mary Ann (not yet knowing how I would accomplish this) and she happily gave me
a few hundred dollars to get sponsored. I only had 120 families on my mailing list, the ones who contributed to the book. I called my new venture The Parent Exchange Newsletter, because it would primarily be an exchange of parent and patient information, much like the groups on Facebook do now. My resources were limited. I cut and pasted paper submissions, and photocopied each newsletter and stapled them. I mailed them and “PEN” was born! Primitive but effective!
After a year of this, Mary Ann wisely suggested to let their promotional group help with the design. They designed a simple but professional look to PEN. I submitted my articles, and they did the layout and printing. We branched out to start writing about topics, not just publishing family letters and photos.
Working by day as an economist, full-time mother from 5 pm to 8 pm, then working on my newsletter each quarter. We mastered home-infusion when my son was two so we were no longer tethered to the HTC.
My biggest break came when my colleague Rob Partridge, then Monoclate-P product manager at Armour, who had approved my book and got me started, asked me to publish another book. The first book was so successful; we had to do another printing soon! Families were
calling Raising a Child With Hemophilia their hemophilia “Bible” and my mailing list grew with each family that wrote to me. More shared their stories, watching to be heard.
Another book! But about what?
As my own children were growing, I (who had a degree in child psychology and also had published research on own children understand health and illness at different ages) realized that as I read each night to my children books like The Hungry Caterpillar, Horton Hears a Who
or The Magic School Bus, there were no books for children on hemophilia. Understanding how children learn to read, and process their world at different age groups, a branch of psychology known as developmental psychology, I felt equipped to try to write a children’s book on hemophilia, to help children understand. Indeed, ideas just came to me as I lived with trying to teach my own son about his disorder in a way he can understand.
I proposed to Rob some children’s books ideas, and he loved it! He approved. I also could sketch and
used to paint, so I was author and illustrator. I thought of a book or poems explaining hemophilia to preschoolers in a fun manner; a history book about Alexis, son of the last Russian tsar, a story which might have changed history forever. Remember I was reading Peter the Great while in labor with my son. I loved Russian history and wanted everyone to know why hemophilia is called the Royal Disease, and then to know the story of how hemophilia changed history, and created modern history. None other than Suzamme Massie, who helped write the Pulitzer Prize winning Nicholas and Alexandria, and whose son has hemophilia, helped me!
I realized that by lining up some contracts for my newsletter (funding from Quantum) and my children’s books (funding from Armour Pharmaceuticals) a dream was born: I could stay home with my children. I wanted nothing more than to be a stay-home mom. I had worked so hard, day and night, doing what we called “The Mommy Track,” trying to be a dressed up businesswoman by day, mom by late afternoon and early evening, and now entrepreneur each evening, I craved to be home to play with my kids in the sunshine, take them to the park, to museums, the Boston Aquarium, make them lunches and relax a bit.
 
With a year’s worth of book contracts, I realized I could quit my job, thus saving a fortune in daycare, professional clothing and dry cleaning, and gas. And make a little bit of money on the side. I had paid off my debts and was ready to enter full time motherhood, with some side projects.
In July 1991, I quit my job at the economic forecasting company, waving good-bye to my colleagues of six years, grateful for all the business, contracts and number-crunching experience I had. These would prove valuable to me as my own business grew. PEN continued
to grow and became focused on teaching, rather than just sharing. And we had a new children’s book called Just a Boy, modeled after Dr. Seuss books. And more would come.
Best of all, I was able to spend a whole summer with my four-year-old son and one-year-old daughter. We lived in an ancient home in a crowded neighborhood—just ten steps and you had traversed the whole house! But we didn’t care. We were home, healthy and making a difference.
Next: Going Global!
** My computer? Macintosh II, the first Apple with color graphics. It features 16 MHz 68020 processor, and 1 MB of RAM. A basic system with one 800 kb 3.5-inch floppy drive, sold for about $1,3900. Ouch. But I am still a loyal Apple customer.

New Year Blessings: Dreams Can Come True!

When it’s a new year, we tend to make goals, lists, things we want to accomplish. I love doing this myself, and I love bringing other’s goals to fruition. That’s pretty much our aim at Save One Life, to assess needs, meet needs, and offer people with bleeding disorders who
live in the most difficult of circumstances hope and even a new beginning.
I recall meeting Jitendra, age 14, in India in November 2012. I met a group of mothers and fathers and their children on the trip in Bhubaneswar, in Orissa, one of the poorest states in India. It is rich in history though, with so many ancient temples, deemed World Heritage sites.
Though I met many families that day, one truly stood out. A father with a driven, intense, haunted look in his eyes. We enrolled his son, Jitendra, and I asked the father his story: what had happened to them, what was the greatest challenge they faced? Usually we hear that there is no factor, they have little money, the child misses school. This father’s
story was different.
He was living in a tent with Jitendra, as a homeless person, as floods had washed away their home. (And by home, I mean probably a thatched roof hut. They live 150 kilometers away from the hospital. The father works on a farm, and must travel far away form his only son each day.
I was stirred by the intense look on his face; his eyes seemed to bore into me.
When I asked him what one thing would
make your life easier, expecting him to say free factor, he said emphatically and without hesitation: a vegetable selling business, to open a roadside
vendorship, to be near his son. Awesome
answer. Needs 50,000 rupees ($1,000) to start. That is an enormous amount of money for him, about one year’s salary.
Can you imagine if someone gave you one year’s salary, and you were homeless? The temptation is always there to drink, have fun, squander it. Not this guy. He used the money Save One Life gave him from its Micro-Enterprise Grant program to open the stand, and earn his own living. Now he is near his son and doesn’t have to be away on the farm working. What a Happy new year for him!
And even better? The Orissa government, one of the poorest in India, is buying factor. Not a miracle, but the result of intense lobbying by the hemophilia chapter there and its leadership—a young man
with hemophilia named Chitta.
If they can achieve those new year goals, imagine what we here in the US can do!
Visit www.saveonelife.net to learn how you can help the poor with hemophilia!
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