Chris Bombardier

United by Blood

Madonna Smith, executive director of Oregon Chapter, adopted a child with hemophilia into our “family”

Well I’m ready for a rest! Last week I was in Orlando at NHF’s 70th annual meeting, and last night, at the New England Hemophilia Association’s Red Tie Soiree in Worcester, Massachusetts. And while there is so much happening with new products, with gene therapy coming closer, new programs for our community, and the spectacular movie Bombardier Blood ready for viewing nationwide, the overriding feeling I have after these major events is… this is family. We are truly a family, united by blood.

With the California gang!

As I’ve been in the community for over 30 years now, I’ve come to know so many people, and have watched as babies have grown to young adults, starting families of their own, some also with bleeding disorders. Our family grows, and grows older! My friends and I, all young moms and dads when we came into this family, are now in our 60s, looking back at the incredible path this bleeding disorder family has traveled together.

One path literally is the one that led to the movie Bombardier Blood, which debuted last Saturday in Orlando. To a standing room only crowd of over 500 people at 7:15 am, the Octapharma-sponsored event and movie about Chris Bombardier’s epic Everest summit brought laughter and tears to all. It is a stunning film, directed by Patrick James Lynch—whose name you all should know as well as Chris’s by now! These two young men with hemophilia have skyrocketed to fame with their achievement. It makes us, the older moms and dads, incredibly proud. We all kind of feel like they are “our” sons, or like our sons. Sons of our community, doing daring things for our community. 

Go Here to See Photos from NHF’s 70th Annual Meeting!

I was honored and fortunate to travel the actual path to Everest base camp with Chris and his wife Jess, and share in part of that historic journey. All the while, I felt like the mother I am, watching out over both of them (as if Chris needed it!). Viewing the movie that morning brought back so many memories and feelings of that journey in May 2017.

So much of the NHF meeting was connecting, with old friends and new, with families in need and families who can share and give. And at the final night we listened to music and danced the night away. While blood unites us as family, music unites us in joy.

I wish everyone could attend NHF’s or HFA’s annual meeting, though I know it’s improbable for most. The meetings are often held in the same spots: Dallas, Chicago,

Laurie Kelley with Derek Nelson, everyone’s favorite

Anaheim, Orlando, San Diego. You’ll never see one in Boston—too expensive. Not everyone can afford to go away by air and stay at hotels. While there are scholarships for first-time families, it sadly still leaves many in our family on the fringe.

Laurie Kelley with Kevin Shaughnessy, who she met when he was 12!

And that’s why we have local chapters and state bleeding disorder organizations. Does your state or region have one? The New England Hemophilia Association has become one of the best run organizations in the US. It wasn’t always that way. As we heard last night, when Charlie Dougherty, who served as treasurer and who passed away earlier this year, found when he joined, it was poorly run and $22,000 in the red. He straightened it up, but it took Rich Pezzillo, a young man with hemophilia, to rocket it into the highest level, and not just by squaring away financials. Rich has breathed new life into NEHA, infusing it with passion and commitment like never before. I confess I never donated to NEHA, even though I’ve lived in New England all my life. But with Rich’s leadership and his crackerjack team, we are all excited to give and participate once again. Last night proved it. I sponsored three tables and invited the team at Save One Life to come and experience the joy of this family reunion, and they had a blast, amazed by the comradery and caring.

In many ways, I find I can enjoy our bleeding disorder family simply by being local. So there’s hope for you too, to join this family by seeking out your local organization. Is it active? Does it have programs? NEHA has programs every month, sometimes every weekend! Does your chapter do a fundraising walk? Have a women’s or teen program? Is there someone to call to learn how to get involved?

I would really urge you to do everything you can to participate. Bleeding disorders can throw a curve ball at you at any time, as life can too. This family, this “Wicked Strong Family” as we say in Boston, is here to help. These friends have become more than friends—they are truly family.

And when I attended the wake last Friday of my first cousin’s husband, who died unexpectedly at only age 61, you realize how family is always family, no matter what. I visited with my cousins, who I rarely see anymore, except on Facebook. We were playmates as children, but life gets busy, the family gets bigger and reunions consist mostly of funerals now. Still, we have history and we are united by blood. It was good to see everyone again; I still love them all.

See Photos from NHF’s 70th Annual Meeting here!

Rising star: Rich Pezzillo with Laurie Kelley

We’ve lost a lot of people in this community this year and as life goes on will continue to lose more. It’s at this time that family comes together: whether nationally, or locally. Find out more about your local chapter; meet your hemophilia/bleeding disorder family. Get involved; give of your time or support. We are all united by blood, and can create the family we need by connecting, caring, sharing and loving.

And a little celebrating and dancing doesn’t hurt either!

Ain’t No Mountain High Enough!

Maybe you’ve heard our amazing news about our amazing Chris Bombardier! The FIRST person with hemophilia to summit Mt. Everest, Mt. Vinson… and well, all Seven Summits!
Chris sits on the board of Save One Life, the nonprofit that I founded, and he shares my love of mountains and my passion for helping people with hemophilia suffering without treatment in developing countries. Together, we are trying to improve their lives.
Our deepest thanks go to Chris, and also to Octapharma, because this manufacturer of human protein products funded these last two mountain climbs, which are expensive and out of reach of most people. Octapharma helped make this dream come true. It was a true team effort! I promised them I’d post this press release. Please read and show your appreciation to them as well!
Octapharma Support Enables Bombardier to Climb Mount Vinson, Becoming First Hemophiliac to Ascend the Seven Summits 

Octapharma Partnership with Mountain Climber will Culminate with 
Release of Documentary Bombardier Blood Later This Year 

HOBOKEN, N.J. (January 25, 2018) – Mountain climber Chris Bombardier of Denver, Colorado on January 6th became the first hemophiliac to climb the Seven Summits of the world with his successful climb of Mount Vinson in Antarctica, a journey made possible with a grant from Octapharma USA. The Seven Summits, the highest peak on each continent, are a feat just over 400 people can claim. 
Octapharma USA also sponsored Bombardier’s climb in 2017 up Mount Everest, the historic mountain in Nepal. Octapharma’s partnership with the mountain climber also includes sponsorship of Bombardier Blood, a documentary scheduled for release later this year that will tell his inspirational story. 
“It was incredible to have Octapharma as a partner on this climb as well,” said Bombardier. “Climbing the 16,050 feet of Mount Vinson was the last climb in my dream of completing the Seven Summits. I could not have made it without the support of Octapharma, Save One Life and countless others. Together, we have shown the world what can be achieved with the proper support and medical treatment.” 
Octapharma USA President Flemming Nielsen said that Bombardier’s journey has inspired thousands of people around the world. 
“Chris has shown all of us that anything is possible if we keep working toward our dreams,” said Nielsen. “Everyone at Octapharma congratulates Chris on this incredible accomplishment. It has been an honor for Octapharma to support his mission and we want him to know that our team has been cheering him on with every step of this incredible journey.” 
Editing for Bombardier Blood will wrap in the spring, according to Believe Limited CEO Patrick James Lynch, the documentary’s director and a filmmaker with severe Hemophilia. 
“We are so proud of Chris for showing the world what people with Hemophilia are capable of when they have access to medication,” said Lynch. “With proper medical care, we can accomplish anything. Believe Limited is grateful to Octapharma for helping to bring this message to people worldwide.” 
Bombardier Blood highlights the disparity in health care in Nepal using Bombardier’s recent Everest summit as a backdrop. Please visit www.bombardierblood.com for more information and a preview of the documentary. 
About the Octapharma Group 
Headquartered in Lachen, Switzerland, Octapharma is one of the largest human protein products manufacturers in the world and has been committed to patient care and medical innovation since 1983. Its core business is the development and production of human proteins from human plasma and human cell lines. Octapharma employs approximately 7,100 people worldwide to support the treatment of patients in over 113 countries with products across the following therapeutic areas: Hematology (coagulation disorders), Immunotherapy (immune disorders) and Critical Care. The company’s American subsidiary, Octapharma USA, is located in Hoboken, N.J. Octapharma operates two state-of-the-art production sites licensed by the U.S. Food and Drug Administration (FDA), providing a high level of production flexibility. For more information, please visit www.octapharmausa.com. 
PHOTO CAPTION: 
Mountain climber Chris Bombardier of Denver, Colorado on January 6th became the first hemophiliac to climb the Seven Summits of the world with his successful climb of Mount Vinson in Antarctica, a journey made possible with a grant from Octapharma USA. 
MEDIA CONTACT: 
Fred Feiner 
Yankee Public Relations 
fred@yankeepr.com 
908-425-4878 
### 
OCTA-0178 

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Octapharma USA, Inc.• 121 River Street, Suite 1201• Hoboken, NJ 07030 • 201-604-1130 • www.octapharmausa.com 

Chris’ Christmas Gift to the World

If your dreams do not scare you, they are not big enough. —Liberian President Ellen Johnson Sirleaf

I’ve never met anyone in my life–and I have met some pretty amazing people in my several careers–who dreamed a dream, set the course, followed through against all odds, and made it happen in the way that Chris Bombardier has. If you met him, and I hope you do, you would be thunderstruck that this shy, extremely humble young man will soon conquer the Seven Summits.

Chris Bombardier

And not just achieving an incredible goal that only about 450 people in the history of the world have ever done. No one has ever done this who has a bleeding disorder. No one might ever repeat this in my lifetime. We are witnessing history in the making! In hemophilia terms, this ranks right up there with landing a man on the moon.

Chris leaves tomorrow, Christmas Day, for the last adventure on this journey that has consumed the last few years of his young life. I interviewed him last week, before the holidays. How did he feel?

“I’m looking forward to my last summit bid—Mt. Vinson. I’m leaving my wife and family on Christmas Day to basically a frozen desert. On December 29, I’ll leave from Chile to fly to the Antarctica continent. I’ll land on Union Glacier, and from there we will get a flight to the mountain base camp, but everything depends on the weather. Base camp is a few miles from the base of Vinson. We’ll stay at camp, sort out our gear, then start the hike.”

I actually traveled with Chris last March when we trekked to Everest base camp, which took 9 days. It was freezing by the time we got to base camp. I stayed three days but Chris had to stay about a month to acclimate, as Everest is 29,000 feet. How long will it take to summit Vinson, which is 16,050 feet?

“It should take us about seven days total. Our challenges this time isn’t the lack of oxygen, like on Everest, but the weather and temperatures. Temperatures can be all over the place, but pretty much it will be below zero all of the time. The wind is the worst here. The wind brings the temperature down, and you can easily get frostbitten.”

With Chris will be his trustworthy guide Ryan Waters, founder and president of Mountain Professionals of Colorado. Ryan’s guided Chris on 5 of the Seven Summits. This one will make it 6! This trip, like the Everest one, is being fully sponsored by Octapharma, which manufactures blood-clotting products like Nuwiq® and wilate®.

What’s even more impressive is that Chris has undertaken these climbs not to make history or for personal glory. He knows that it will gather world-wide attention, but not for himself, but to highlight the inequity in treatment for those with hemophilia in developing countries. He worked in Kenya, before he started his climbs, helping to establish a lab in Eldoret, and what he saw convinced him he had to draw attention to how much people with bleeding disorders suffer. Chris and I met in 2011 at a NACCHO conference; after I gave my talk about our work in developing countries helping people with bleeding disorders, Chris told me he wanted to do the Seven Summits–just a wild dream he had to help bring attention to this problem.  A lover of mountains myself, and avid reader of those who undergo extreme hardship while exploring (David Livingston, I presume?) and achieving (Mallory, because he’s there), and reading everything I could get my hands on related to summiting anything, I told Chris go for it, and I will help in every way humanly possible. He did all the training and work, and I’ve been cheering him on! And Chris joined our board of directors at Save One Life.

Chris wants to dedicate this climb to raising money for our scholarship program. He writes, 

“With your support, I know I can make this climb successful! 

Follow Chris’s adventures here!

“No longer can anyone say that someone with hemophilia can’t climb Everest, Vinson or reach any dream, as long as they have with proper treatment, training and medical care. By standing on these Seven Summits, I hope to show what is possible. I hope by holding the Save One Life banner on each summit we can show the world that only 25% of people living with hemophilia even have access to adequate treatment to chase dreams.  Let’s help everyone aim for their dreams by helping to raise $16,050—the height of Vinson— for our scholarships!”

Chris is doing the hard part; let’s help him achieve this last mountain and goal by raising $16,050! If he can climb Vinson, then we can raise the money!

Watch a message from Chris as he prepares to leave…

Our thanks to Octapharma for sponsoring this incredible, history-making adventure!

 
 

NHF’s 69th Annual Meeting in Chicago

“Exploring the Next Frontier” was the theme for the 69th annual National Hemophilia Foundation meeting in the dazzling city of Chicago. A record-breaking 2,987 community members flocked to the Windy City (do you know why it’s called that?)—patients, treatment center staff, industry representatives and hemophilia organization advocates—to share stories, to educate, to network, and to learn.
Inside a blood vessel!

For me, it was my 25th annual meeting, and more like a huge family reunion. With so many friends from past meetings and local chapter meetings and correspondence, on top of all my new friends on Facebook, it was almost impossible to go from point A to point B without bumping into someone I knew!

Brian Andrews, chair of NHF, opened the weekend-long event Thursday evening by welcoming everyone; Val Bias, CEO, stressed inclusiveness and our diversity: individually he welcomed the VWD community, the FX, FI, FXIII, women with bleeding disorders (not VWD but hemophilia!) communities, who all stood up. Val then placed the focus on the National AIDS Memorial Grove, San Francisco, on which names of those with hemophilia lost to AIDS are carved. A touching video showed the memorial, with comments from community members, in particular Jeanne White-Ginder, whose son Ryan White, our own national hero, in 1982 put a tender young face to the scourge of hemophilia/AIDS by refusing to accept being ousted from his school. His stand led to a national movement to better understand the suffering of AIDS patients, the discrimination they faced and the erroneous fear that electrified Americans, most of whom believed you
could contract HIV just from a handshake.
 
It was a beautiful video, and Jeanne concluded it with a heartfelt, tearful speech about her love for our community. Val asked for donations, to raise $50,000 for the Memorial, and by the close of the conference, $41,000 had been raised!
 
The next few days were jam-packed with activities, educational sessions, and walks through the industry and nonprofit booths
downstairs, where consumers could play games, speak with reps, and pick up literature on products and services.
 
Our own Save One Life had a booth that actively received inquiries on how to sponsor a child with a bleeding disorder in a developing country.
 

The highlight of my visit was the Octapharma symposium Friday morning, showcasing the documentary trailer for “Bombardier Blood,” directed by Patrick James Lynch, who has hemophilia A. Patrick shared the incredible story of the making of the documentary—a project of which I was a part! I traveled to Nepal (visit #4) to introduce Patrick and his team to the Nepalese Hemophilia Society, and to watch as the team filmed Chris Bombardier (factor IX, from Denver) visit the treatment center, travel to patients’ homes, and attend a fun cultural evening before heading out to attempt to summit Mt. Everest. I also accompanied Chris, his wife Jess and photographer Rob Bradford, all the way to Everest Base Camp.
 
 
Although I was with them the week in Kathmandu, and then endured the rugged 9-day trek to base camp at 17,500 feet, and then shivered three days at base camp, with 1° temps at night, nothing, nothing stirred me as much as watching the documentary. The full impact of Chris’s sacrifices, the months of training, overcoming fears, and the pressure on this young man to succeed, hit me full force as we saw in six minutes scenes from Denver, from Nepal, patients, base camp… and Chris on the summit, talking through his oxygen mask, holding a banner on which was written the names of Nepalese patients with hemophilia. He did it for them; he did it for us.
Patrick J.Lynch, Laurie Kelley, Chris Bombardier

Over 360 people had permits to climbing Everest that season; 60 summited, including Chris; 10 died, including a world class alpinist, Ueli Steck. Chris risked his life to achieve something no one in history had done: being the first with hemophilia to summit Mt. Everest. Listening to Patrick, and seeing the beautiful trailer, we were all wiping away tears. The human heart has so much potential for courage, for sacrifice for our fellow humans, for overcoming fear and pain. Chris embodied all this.

I worried for the next speaker: how do you top that? But you know, Seth Rojhani, a young man from Denver, nailed it. His story was incredibly motivating and uplifting: being born with hemophilia, then losing your ability to walk after having a spinal bleed, and the surgeons severing your spine accidentally. But nothing has stopped Seth. He loved sports, and with the full support from his wonderful parents (who I am proud to say I know) he participated in many sports!
 
With his favorite basketball team the Denver Nuggets, Seth Rojhani went on to form “Rolling Denver Nuggets,” a basketball team for wheelchair participants. I loved when he shared his formula for success:

Seth Rojhani and Laurie Kelley
 
He stayed on a consistent prophy schedule; He rested until all injuries healed; He visited his HTC often. Seth received numerous athletic awards, including the Bronze medal for his team in the Maccabiah Games in Israel this past July. And he promptly pulled out the gleaming medal for the audience to see! Seth said, “Hemophilia is a speed bump, not an obstacle.” He also shared that his father, Ira, told him, “Think positive and good things will happen.” His belief in this way of thinking has never let him down.
 
When asked of the three participants—Patrick, Chris and Seth—what was the biggest challenge they faced in life, Patrick mentioned losing his brother Adam. His brother never identified with the hemophilia community, and felt isolated, alone. He might as well lived on the outskirts of Nepal, exclaimed Patrick, without factor or comprehensive care. Patrick’s greatest
challenge is overcoming the loss of his brother. Chris’s? Not Mt. Everest but needles! Chris has a needle phobia! And Seth? Being told no so much in his life.
 
The speakers deservedly received a standing ovation for their incredible stories and work. The three days were filled with symposia and sessions. For first time, the LGBT community had their own session, led by our own (New England-based) Justin Levesque. And I am proud to say that PEN was the first publication in our community to publish an article about the community needs, also written by Justin. 
 
Women with bleeding disorder and those with VWD were also given lots of meeting and air time. You can see a big shift in mindsets this year about inclusion in our community. Those on the fringe are now being heard.
 
There were also sessions for siblings and one for men only; sessions about pain management, addiction, and gene therapy. The only bad thing about NHF’s Annual meeting is that there is so much to see, hear and do! I couldn’t take in everything unfortunately.
 
The event ended with a stunning visit to the world famous Field Museum, sponsored by Bioverativ, where families could see the wonders of nature and natural history. My favorite display are “The Ghost and the Darkness,” two man-eating lions from Tsavo, Kenya, which were killed in 1898 after they had killed many workers on the railroad. A Hollywood movie starring Val Kilmer and Michael Douglas tells a somewhat fictional version of the story. It’s a good story but better to see them for real at the museum.

 

 

Hemophilia History Made: Everest Summit!

Mountaineer Chris Bombardier

He did it! History made!  Chris
Bombardier, the young man from Denver, Colorado with hemophilia B, around 10 pm last night became the first person in history with hemophilia to summit Mt.
Everest! Everest alone is an incredible challenge due to the high altitude,
which kicks in on the nine-day trek to base camp at about 10,000 feet. Everest
is 29,029 ft. Chris has hemophilia,
and faces prolonged bleeding from injuries. He uses an extended half-life product,
which will help increase the length of time factor circulates in his blood. So
many have asked how he is protecting himself: factor, prophylaxis, oxygen
tanks, and great sherpas to help guide him. It takes a special kind of person
to dream of this, train for this, and take on this. And he is doing this not just for personal best record or even to make history, but to shine a spotlight on the huge disparity in care between hemophilia treatment in countries like the US and in countries like Nepal.

Read from his blog, Adventures of a Hemophiliac. What does a guy with hemophilia think
and feel before undertaking a history-making adventure?
Infusing on a rock!

TUESDAY May 16



I finished my last infusion at base camp and tomorrow morning
our team will begin our summit push. I’m not exactly sure how to describe the
feelings I am currently having. I’m excited, nervous, scared and hopeful all at
the same time. I know the next week of my life will be incredibly hard, full of
moments of questioning my sanity and of overwhelming joy. I’ll be able to
witness some of the most amazing views on this planet and also be more
exhausted than I have ever been.

Through the hard moments and the amazing moments I know that I have a family
that is supporting me no matter what. My beautiful and strong wife, my
incredible parents, aunts, uncles and friends will be with me ever step of the
way. I also know that I have my bleeding disorder family from all over the
globe cheering me on and that makes me feel strong.

As I pack my gear and put my boots on in the morning and walk into the [Khumbu]
icefall with only the light of my headlamp showing the way, I’ll think about
how fortunate I am to be able to choose this life and this adventure. Choose to
try and push myself farther than I could ever dream and step on the top of the
world. I’ll also think about all my blood brothers and sisters that aren’t able
to have that choice…. yet. I’ll remember that by standing on the summit and
by raising awareness about hemophilia and disparity in care, we can change that.

The hope is that we can summit on May 22. While I am challenging myself on the
mountain I want to challenge all of you. We already met the goal of finding
sponsors for every child on the Save One Life,
Inc.
 website. 55 kids have now been sponsored since I began
this adventure! Let’s not stop there!

The climbers promoting Save One Life
I would love to see the fundraising page for my Everest climb
reach $8,848, the amount of meters above
sea level the summit reaches. I won’t know if we’ve reached that goal until two
days after the summit and I reach basecamp but that would be icing on the cake.
Those funds will help those with hemophilia in Nepal continue to rebuild after
the earthquake. It will help them climb their own personal “Everest”
and work towards living the lives they choose. I would also urge you to reach
out to Save One Life and put your name on the waiting list to sponsor a child.
There will be more children added soon and they all could use our help.

Thank you all for the support and hopefully in few days no one will be able to
say someone with hemophilia can’t climb Everest. 

Navigating the Khumbu icefall: first steps to Everest

And thanks to Octapharma for sponsoring Chris’s historic
climb!
Visit our Gallery to see the trek to base camp!
Visit our Gallery to see our visit to Nepal’s hemophilia families
Read more about our Nepal trip here!
“Climbing, simply and joyfully, is the way I love the world.” Steph Davis, High Infactuation: A Climber’s Guide to Love and Gravity
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