Chris Bombardier

Off to Nepal.. and Everest

I’m sitting at Gate 11, Terminal E, waiting for my flight to Nepal, and just remembered I didn’t lock either of my checked bags. I never forget something like that. I’m a bit distracted: my head’s on the upcoming climb to Everest base camp. Everything else is packed: climbing gear, boots, trekking poles, layers and layers of clothing (base layer, mid-layers, outer shells), medicine to cover all typical ailments including altitude sickness and bronchial infections, expedition sunglasses, hats, bandanas, gloves and liners… somehow it all fit into the North Face Base Camp bag with room to spare. I filled that room with donated stuffed animals for the kids in Nepal. hopefully it will all be there when I arrive in Kathmandu!

How are the kids in Nepal? We have about 100 of them registered with Save One Life and track their progress through our program. Nepal is one of the world’s poorest countries, and yet it has a stellar Nepal Hemophilia Society run by people with hemophilia. For the beneficiaries of Save One Life, we check to see if they have enough income, are in school, and whether they get treatment for their hemophilia. We have many prominent sponsors in our community who fund these families.
Laurie Kelley with Youth Group, Nepal Hemophilia Society
September 2015
The country suffered a devastating earthquake on April 25, 2015; several members of the hemophilia community died. The hospital was damaged; homes left in piles of bricks. I toured the earthquake damage when I was there in September 2015, and realized in the global hemophilia community there is no emergency response protocol or team. It doesn’t happen often, but in earthquake prone areas like Nepal, it would be a good program to establish.
See my trip to Nepal 6 months after the earthquake here. 
I’m looking forward this coming week to meeting our kids again, seeing what the needs are, how they have managed. We raised funds shortly after the earthquake with the massive help of the Mary Gooley Center in Rochester, New York, to help with housing and necessities. Patrick James Lynch and his team at Believe Ltd. is coming on this trip as well to make a documentary about life in developing countries, through the eyes of Chris Bombardier, a young man with hemophilia B from Denver, Colorado, who will be the first person with hemophilia to attempt to summit Everest!
I’ll be with Chris this week as we tour homes and the hospital, and visit the earthquake areas. Then Chris, his wife Jess, photographer Rob Bradford and I all head out for Everest base camp on April 2 with renowned guide Ryan Waters of Mountain Professionals. Ryan has accompanied Chris on four of his Seven Summits. Everest will be Chris’s sixth summit… and that would leave Mt. Vinson in Antarctica.
Chris infusing on a summit!
Chris would have summited Vinson by now, but he was denied access! Why?

Because he has hemophilia–a “disability.” Huh. Chris has a few things to show the guys in Antarctica. 

Chris also has a few things to show his peers in developing countries. The mountain is a metaphor for overcoming any challenge. You can’t get anywhere in life unless you first set your sights on a summit; get the right equipment; train, train, train–success is hard work; map your route; get a guide; then go.
Waiting to see this on Everest!
Go Chris! We wish you success and safety, and everyone thanks you for your heroic efforts on behalf of people with hemophilia everywhere!
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From the bottom of our hearts and hiking boots we wish to thank Octapharma for completely funding Chris’s climb, and Believe Ltd.’s documentary. While there is no amount of money that can compensate Chris for his time and personal risks, none of this adventure and effort would be possible without Octapharma’s generous support and more importantly, its belief in Chris and Save One Life. Chairman Wolfgang Marguerre has been one of Save One Life’s biggest supporter and sponsor of children with hemophilia in developing countries. He truly believes in our mission. Thank you Mr. Marguerre and all your colleagues, including Flemming Neilsen and Carl Trenz, for your help and support!

If you would like to sponsor a chid in need, visit www.SaveOneLife.net to learn more. Together we are improving lives with hemophilia…one at a time.

What’s Your Everest?

I was scanning through Facebook, wondering what to write about for Sunday night, and came across a post by one of my hemo-heroes, Luis Andres Aguayo. I’ve never met “L.A.”, though he wrote an article for PEN last year and we’ve chatted on the phone. He is a body-builder, and posts regularly about his competitions and more importantly about his training. 
Despite the fact that I’m old enough to be his mother, his posts inspire me; his life inspires me. His physique is incredible. He has absolutely sculpted it through determination, goal-setting, pain, and infinite number of hours in the gym. All the while, he remains humble and a joy to speak with. 
Chris Bombardier on Carstenz Pyramid, one of
the Seven Summits
I’m training too, for a mountain trek to Everest base camp in April with another hemo-hero, Chris Bombardier from Colorado. Chris also has goals, determination and infinite hours spent hiking and climbing to prepare. And… I am also old enough to be his mother!
Training is hard at age 59, even when you think you’re in pretty good shape. These two heroes have hemophilia, and when I think of what they are accomplishing in spite of their disorders, I get motivated to push harder. Chris has already summited five of the Seven Summits! L.A. came close to winning being on the cover of a men’s fitness magazine! I love mountain climbing, and I love weight training, so it’s natural I enjoy following these guys as they train.
But it’s tough for me. Even just five years ago I saw tremendous change when I worked out consistently. Now, it’s like everything takes twice as much for half the results. But I keep going!
Tonight I am aching all over from a double whammy: training at 8 am for an hour with my trainer Dan French, and later in the day running 6 miles in the 45° weather. My treadmill died last week (no, not from overusing it) and nothing beats running outside. I felt good but ouch, later on, aching knees and back.
One of my hemo-heroes!
I have 6 weeks left before the Everest trek. Here’s what a typical week is like while training:
Sunday: Day off. Recovery is very important for the body, especially at this age. I’m paranoid about getting an injury which is all too easy to do.
Monday: Yoga for 30 minutes (a MUST!). Training with Dan, upper body and abs, one hour.
Tuesday: Yoga. Cardio… either in the gym in Salisbury, Massachusetts, or at my home gym. I can ride my stationery bike while watching a documentary about mountain climbing, or throw on a 20-lb backpack and hike up and down for 90 ridiculous minutes on a plyo box over and over while watching Dr. Strange or Mad Max. Superhero movies make you feel empowered! This is a killer workout.
Wednesday: Training with Dan, lower body (tons of lunges and jump squats) and abs.
Thursday: Yoga. Cardio, maybe the elliptical for 90 minutes at the gym, excellent workout!
Friday: Yoga. Training with Dan, speed work-out. This is a killer too. Usually Dan and I chat about music, but 10 minutes into this workout I can’t talk. I even get dizzy.
Saturday: More cardio!
And food: 75% of training is eating the right food and having the right diet. Dan analyzed my diet 6 years ago when he was getting me ready for Kilimanjaro and saw I needed more water and protein, and basically overhauled how I ate. So I cut out (for the most part): soda, diet soda, fruit juice, alcohol, sugar. We don’t keep any of that in the house. No pasta, white bread, desserts. A typical day goes just like this:
Breakfast: three scrambled egg whites, cantaloupe or banana, black tea.
Lunch: (and after a workout) A protein shake with banana, pineapple (or berries), 14 raw almonds and GNC Whey protein powder. Delish.
Dinner: I don’t actually eat dinner unless I go out. Why? I don’t know how to cook and don’t even like to cook. Things burn and catch fire all the time. So I have another shake, or a salad with protein (shrimp, eggs), or a banana with organic peanut butter. I eat out about twice a week, when I’ll have fish. 
My demons? Movie popcorn and M&Ms. I love going to movies and twice I have not had movie popcorn and it was not the same experience! And Dan tells me movie popcorn is the worst thing you can eat, next to Cinnabon.
Despite having a trainer, I still get motivation from people like L.A. and Chris. As they give hope to young guys with hemophilia to reach their dreams, I hope I can inspire some moms who want to get in shape. It’s never too late to start. It helps to have a goal, a big goal, like a mountain climb. Kilimanjaro was an incredible experience, both times! And I know Everest base camp will be a dream come true. 
L.A. wrote this recently on Facebook: “Keep this in my notes! What’s your one sentence destiny? The vision you base your decisions on?” His is, “Use adversity to change others’ lives.” And Jordan Romero, the youngest person to conquer the Seven Summits, asks, “What’s Your Everest?”
I love that. Our Everest climb will put a spotlight we hope on Nepal and its people with hemophilia, who live in hardship, especially after the 2015 earthquake. We’re going to meet with the 80 people we help through Save One Life. You can follow L.A. and Chris on Facebook, and read HemaBlog to see how the training and eventually the climb are going!
Great Book I Just Read
No Summit Out of Sight: The True Story of the Youngest Person to Climb the Seven Summits
Jordan Romero
An inspirational book about the boy who summited Everest at age 13, and conquered all Seven Summits by age 15. Despite warnings from critics about having someone so young attempt something so dangerous, Jordan was well prepared, genetically-gifted and just plain lucky. He documents what inspired him, his training, his observations of the countries, people and climbs. It’s fun and interesting, and Jordan’s a marvel. He uses his climbs to motivate other children now by posing the question: What’s your Everest? A light read, but very engaging. Kudos to this remarkable young man and his family! 3/5 stars.

The Mountains are Calling…

The mountains are calling, and I must go. —John Muir

What is it that makes someone crave climbing hard, cold, dangerous mountains? Is it the challenge? The view? The bragging rights?

I never knew I loved mountains so much until I was well into my 40s and took up rock climbing on a whim. And that was in a gym. When I tried it outside, on New Hampshire’s Cathedral Ledge, a 500-foot sheer drop, I was hooked forever. A combination of fear, exhilaration, adrenaline, relief, and a huge sense of accomplishment flooded me. I knew very well there was a chemical aspect of this as endorphins coursed through my blood, making me feel drunkenly happy. Welcome to my new addiction.

I also knew that the intense concentration I had just experienced for four straight hours made me completely forget the world, any worries, the future, the past. Everything was reduced to, “Find that next nub to put your toe on and hang on for your life.” It was remarkably clarifying, much like skydiving, or even playing a complex piano piece. Such intense focus actually relaxes the brain when you finish the jump or performance. It’s like meditation.

And then, there’s just something inexplicable to me about rocks. I love them. I love the sight of them, color, feel. When I see a pretty rock at my feet, I pick it up to examine it. When I drive down the highway, I scan the dynamited masses on either side and imagine trying to scale them. When I am in Utah, my rock mecca, I just gape at the surreal world of red, striated rocks that reveal the history of the earth, the mesas, the hoodoos. When I get close to rocks, I feel something; energy? I know some people swear by the healing power of certain rocks. I don’t know about that, but I do know being near them makes me feel connected to earth, to life, to the universe.

My view of Kilimanjaro August 2016

Climbing is less about the view, and more about the journey, overcoming fears, pushing yourself to extreme limits, wringing out every ounce of strength (and oxygen) in you to see how much you can handle. It’s a psychological test set among the most beautiful places on earth.

Last summer I couldn’t wait to jump out of bed once or twice a week at 4:30 am, grab my gear, and head north to New Hampshire’s Mt. Washington for a 7-hour strenuous hike. You finish utterly wiped out, starving, grimy, sweaty, and deliriously happy. That was in preparation for Mt. Kilimanjaro last August.

Now I am training again—for Everest base came, in two and a half months.

Chris Bombardier

I’ll be following in the footsteps of mountaineer Chris Bombardier, person with hemophilia B, friend, and fellow board member of Save One Life. Chris also loves mountains, and he is lucky enough to live in Denver, and grew up among rocks. Chris is attempting to complete the Seven Summits, the highest mountains on each of the seven continents. He’s completed five to date (though has “temporarily” been denied access to Mt. Vinson in Antarctica due to his hemophilia). Well, when he was denied, he thought, “I’ll show them! I’ll just climb Everest first!” So Chris will be attempting to summit Everest in early May!

If successful, Chris will become the first person with hemophilia in history to reach all Seven Summits.

He’s done five of them: Kilimanjaro (Africa), Aconcagua (South America), Denali (North America), Elbrus (Europe), and Cartstenz Pyramid (Australia). Now, just Everest in Nepal and Vinson in Antarctica remain.

You may know Chris, a rising star in the hemophilia community. I first met Chris in 2011 at NACCHO, when he was about to climb Kilimanjaro with his uncle, and I was about to climb it a few months after him as a fundraiser for Save One Life. He shared his dream and I heartily approved and told him I would help if at all possible. I’ve followed each of his summits; we helped fund one of them. When no funding seemed apparent and he would get downcast, I told him to stay positive, it will happen; nothing will stop someone with such big and noble dreams. And sure enough, the funding for Everest was daunting, for anyone but especially a young man from Denver. But luckily, I’m not the only one who believes in Chris! Octapharma, a privately owned Swiss company that manufactures blood clotting medicine, funded Chris’s fees and travel entirely!

Best of all, this historical event will be captured on film and made into a documentary by Patrick James Lynch, another rising star in hemophilia, and Believe Ltd.

Chris on Aconcagua, with picture
of Brian, a suffering child with hemophilia,
Chris’s motivation

And there is a higher goal, beyond challenging ourselves and setting records in the hemophilia community. Chris wants above all to highlight the gaping disparity in treatment between the developed and developing countries. And as you know, this has been a passion of mine for the past 20 years. I’m thrilled that Chris cares as much as I do about changing the lives of 300,000 people worldwide with no access to factor. In fact, Chris is betting his life on it: a climb up Everest is difficult and dangerous. Chris is taking these risks because his reward is that the spotlight will be put on those who suffer even more.

Save One Life has been working in Nepal for years and we sponsor over 80 people there with hemophilia. We helped provide funding to rebuild homes post-earthquake, and LA Kelley Communications has helped pay for surgeries. It’s a country dear to us all.

So why do we climb? To feel rare emotions—euphoria, extreme exhaustion, deep joy, eternal gratitude. To overcome out fears; to push ourselves to the limits; to do something with lasting impact—a historical climb, a movie about hemophilia; and hopefully to change the lives of our fellow community members who need our help.

And me? I’m going to base camp at 17,600 feet after a nine day hike through stunning vistas (with yaks!), spending two days with Chris, then descending, leaving him to prepare for the climb about a month afterwards. I’ll have some stories to tell, and prayers to leave for my friend, one of the bravest guys I know.

Follow Chris’s preparation and climb on his Facebook blog Adventures of a Hemophiliac.      

  

Resiliency Key at HFA’s Symposium 2016

Jane Cavanaugh Smith (middle), with CoRe managers
I have known Laurie Kelley for more than 20 years and can’t begin to
count the number of times I have looked to her for education, resources, and
support.  So, it is such an honor to be a
guest blogger for HemaBlog. My name is Jane Cavanaugh Smith and I am a Biogen Community
Relations (CoRe) Manager. My son has hemophilia and we were fortunate to
connect early with our local chapter. This led to an unexpected and extremely
rewarding career with the New England Hemophilia Association, and later, the
Hemophilia Federation of America (HFA). When Biogen introduced CoRe Managers several
years ago, I watched with interest as their team grew. The fact that a CoRe
Manager’s sole job is to support our community—to listen, educate, connect, advise,
and serve–confirmed that Biogen was the place for me.
Jane speaking at HFA
At HFA’s Symposium 2016, held March 31 to April 2, the theme, “Together
We Are Resilient” beautifully captured the strength of our community because resiliency
is about bouncing back. Individuals and families have to regularly overcome obstacles,
but sometimes the challenges are overwhelming. That’s when we turn to each
other in the open, honest, and supportive environment that HFA provides. These
connections live on long beyond the Symposium. 
“Together We Are Resilient” was carried through the conference in a
variety of sessions and activities aimed to feed mind, body, and soul.
Knowledge is power and key to weathering rocky times. Activities included daily
Zumba sessions, aquatic therapy, yoga, and a Health & Wellness Lounge.
Session topics included women’s issues, advocacy, insurance, treatments, and
inhibitors. A few personal favorites include the Awards Luncheon, the
Remembrance Ceremony, the rap sessions, seeing kids in matching shirts and
holding hands, and all the hugs, tears, and laughs.

At
Biogen, we took the theme to heart, too. Each day at HFA, we tried to provide
families with new opportunities to meet, learn, and be resilient together. It
was a blast. The Chapter Challenge games brought out altruism and humor as
visitors tried to win donations for their local chapter. The Biogen Peer videos (click here, and here) showcased inspiring role models. Many visitors inquired about our therapies,
so it gave me and my fellow CoRe Managers countless opportunities to get to
know even more people in the hemophilia community. I like to think that
resilient people see meaning and purpose in what they do. I definitely see that in my fellow CoRes. We
build resilience by showing our vulnerability, empathy, understanding, and
appreciation, and gratitude for each other.

Jane interviewing Chris Bombardier
I was also honored to emcee Biogen’s Friday dinner program, Food for
Thought. I’ve never spoken in front of a large crowd, but I knew that I was surrounded
by friends. Our keynote speaker, Chris Bombardier, shared his inspiring story
of overcoming challenges despite long odds. Chris has severe hemophilia B but
is on a quest to climb the world’s seven summits. Hearing his motivation and
drive, he will surely complete the remaining two. 
Biogen “gets it.” They celebrated the power of positive thinking to
inspire our community. As the program came to a close, I looked over at my son
who is the source of my strength and hope. I am deeply thankful for this
community. Together we celebrate the highs and find comfort during lows. Together
we are resilient.
Biogen’s CoRe managers at HFA
To find a Biogen CoRe Manager near you, visit CoReManagers.com.












This blog was
sponsored by Biogen for educational purposes.
HEM-US-1012   04/16

March’s Child

I remember the Boston Globe column called “Sunday’s Child,” which profiled a beautiful child every Sunday in the Boston area in need of a foster home, in the hopes it would end in adoption. Let’s call this week’s blog post “March’s Child.” We have children with hemophilia in need of sponsorship!

It’s March, Hemophilia Awareness Month, and yet there are children in developing countries who lie at the fringe of our community, unaware that it’s “their” month, poor, suffering, waiting for help. We do our best to provide factor to these children through Project SHARE. But did you know you can sponsor one of these children through our sponsorship program Save One Life?

Helping us promote our cause is the amazing Chris Bombardier, who just spent 3 weeks in the wilderness, summiting Carstenz Pyramid in Indonesia. Yup, he flew all the way there, and suffered up that enormous mountain (the highest in Oceana–a stand-in for continent Australia) and #5 on his Seven Summits Quest) to raise awareness for hemophilia in March and for Save One Life in particular. How is that for sacrifice and dedication?

Most of us don’t need to go to such an extreme, though Chris so kindly asked me to accompany him (I would have if I didn’t have so much hemophilia-related work going on right now). We can just sponsor a child at only $22 a month. We are trying to get a mere 31 children sponsored in March, one for each day. We’ve almost reached our goal! Just FIVE more! We even have their photos below. Please consider helping us reach our goals to help give them a better life! It’s Hemophilia Awareness Month: Thanks to those who have pledged sponsorship! We hope more blog readers will rally to help these deserving children; what better month to make a pledge than March?

You can read more about Chris’s amazing climb here!

Laurie Kelley, founder,
Save One Life



Add caption


Great Book I Just Read
Eiger Dreams: Ventures of Men and Mountains by Jon Krakauer

From the mountain-climbing author of Into Thin Air comes nine gripping and informative stories about historic mountain climbs and the intriguing people who climb them. He covers K2, Denali, Everest and the Nordwand (Eiger) interspersing modern day adventurists and alpinists with history of climbing for each mountain. Krakaeur is a great storyteller: no nonsense but infusing his stories with awe, respect and love of the mountains. He also includes his own struggles with each mountain while portraying others’ climbs. Four/five stars.

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