Octapharma

Bombardier Blood: Incredible Journey with a Cast of Characters

Coincidences are God’s way of staying anonymous. Albert Einstein 

Yesterday I was in Denver, Colorado, to attend the hometown premiere of Bombardier Blood, the new documentary that chronicles the life and achievement of Chris Bombardier, a person with hemophilia B this year who became the first person with hemophilia to complete the Seven Summits. The movie was debuted at NHF’s annual meeting in Orlando, in October, to an audience of over 500.  Yesterday, the Colorado Hemophilia Society rented an IMAX theater, and invited the Colorado bleeding disorder community to attend.

Chris and Jess Bombardier with Laurie Kelley and Amy Board Photo: Rob Bradford

What a proud day for Colorado! Chris and his wife Jess attended, flying in as I did from Boston, which recently became their new home. Chris’s whole family came: parents Alan and Cathy, Aunt Bev and Uncle Jay Labe and cousin Nicole, and of course, “Crazy” Uncle Dave. And while Chris’s whole family is incredibly warm, down-to-earth and personable, I really wanted to meet this character Uncle Dave! When you see the movie—and you will someday—you will know what I mean!

Chris’s poster is right next to Bumblebee’s and Aquaman’s!

We congratulated the astounding film-making and editing team of Rob Bradford and Steven Sander, who were both present, and thanked expedition and film sponsor Octapharma. The theater filled with community members—moms, dads, small children, and many of Chris’s peers with hemophilia—holding popcorn, soda and high expectations. We settled into our seats before the mammoth screen, hushed our voices, silenced our cell phones, and the theater darkened. The darkness faded into a scene of Everest, prayer flags, snow and ice, and Chris, trying to skewer a vein in the icy air. The film continued from this moment at Everest, into a 90-minute tale of what it took to get him there. It is a fascinating story of a boy with hemophilia who dreamed of being a baseball player, who was thwarted in his dreams, who suffered depression, anger, who was disconnected from his own local community… until key events unfolded in sequence, “like divine intervention,” one audience member confided. The events included the right people appearing in his life at the right time, until his destiny seemed all but spelled out. This young man would conquer Everest.

Chris’s proud parents, Cathy and Alan

I took part in Chris’s journey at some point, and have seen this movie three times now. It never fails to inspire. You want to jump out of your seat and get moving, to find your own dream, and then make it happen. If Chris could climb the Seven Summits (a feat only about 450 humans ever in history have done!), and did it with hemophilia, then what can the rest of us accomplish? We are only limited, it seems, by our own imagination, and our belief in ourselves.

The audience loves it! Photo: Rob Bradford

But some new footage was added to this version of the film—the role played by the vivacious and energetic Amy Board, executive director of the Colorado Hemophilia Society. Amy was the person who drew Chris out from the crowd. She encouraged him to come to hemophilia camp, where Chris met someone else with hemophilia for the first time. He saw how the children were active, happy, connected. And Chris became connected. He volunteered at camp, became a mentor to the children. Due to Amy, Chris became part of the hemophilia community. It was the first major step on the long hike to better mental health, a career, a new vision… and ultimately Everest.

Laurie Kelley meets Crazy Uncle Dave!

Chris did not just scale the Seven Summits or make a movie about himself; he has promoted hemophilia worldwide with his life-risking achievement, and he has made a call for action for others, to help those in developing countries through Save One Life. Without Amy, without camp, he might not have joined the community. Without working at the Indiana HTC as a lab tech, he might never have gone to Africa, where his eyes were opened to the suffering of his blood brothers overseas. Without Uncle Dave? Who knows. Bombardier Blood boasts a cast of supporting characters who embody this mystical truth: We never know what ripples we create when we reach out, take a risk, and care about another human being.

Chris did it. He made history. First person with hemophilia to scale Everest, and to bag the Seven Summits. And I suspect that Chris’s story is far from over, but is really just beginning.

Chris with photographer Rob Bradford
Laurie with Octapharma reps Paul Wilk and Elizabeth Pulley
Laurie Kelley with photographer Rob Bradford and film editor Steven Sander

         

 

 

 

 

 

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 

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

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!
Sign up to get notifications about Chris’s historic here!

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.

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