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GutMonkey: Who are they?

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GutMonkey: Who are they?

Yesterday I got to hangout with some really amazing people in Portland, Oregon, the GutMonkey crew! What is a GutMonkey you might ask? Well, it's not a what, but a who. They are an outdoor experiential education company with close ties to our hemophilia community. But they are so much more than just a company; they are an exceptional group of people that want to use their unique wilderness skills to change our community's perspective on how hemophiliacs seek adventure.

Pat Torrey is the head monkey and started the company in 2005. He has a wealth of knowledge in the outdoor world, especially with knots, as he knows hundreds of them! He designed and built high ropes courses for years, and after a chance meeting with someone in our community, Pat got sucked in and has never left. His brother Joe joined a few years ago to make this a family affair and Jacose Bell joined a little over two years ago to round out the group.

One of their missions as a company is to help facilitate emotional and physical growth through outdoor experiences. I have a shared vision with GutMonkey; to inspire people to be adventurous and genuine. GutMonkey creates those moments by running week long trips in some of the most beautiful places in the United States called Leading X. Their Leading Edge program teaches teens about leadership skills in conference and camp settings. They run an amazing strictly Hemophilia B program called GenIX which emphasizes mentoring while men with inhibitors go camping and on ropes courses on their Leverage program. They provide people in the bleeding disorder community with unbelievable experiences and the confidence to do more and Be Brave!

I joined them on one of their Leading X programs last year on the Green River in Utah. It was an incredible journey, not just because of the spectacular views, but because of the friends I found and the bonds I made. There is something special about sitting around the campfire after a long day of adventure and physical work and reminiscing about how each of us were affected. It's easier to connect with one another and be honest about your feelings and thoughts about the world. I will never forget that trip, and I'm so excited for the group heading out to the river this year to get to build some of their own memories!

Please check out this incredible company and their programs here and join one of their trips! Few people get the chance to experience these magical wonders while being led by such experienced and fun people. I guarantee you won't regret it!

The first Green River trip for Leading X! The crew brought plenty of leadership experience, and left with a plan to help the bleeding disorders community.

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World Hemophilia Day 2016

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World Hemophilia Day 2016

Today, I am sitting at home with my wonderful wife, enjoying our warm house while the last snow storm of the winter (hopefully) is wrapping up. I'm still sore from my pulled hamstring and subsequent bleed but I'm recovering. It would seem like today is turning out to be pretty wonderful but there is something different about today. It's World Hemophilia Day.

World Hemophilia Day is about spreading awareness because it looks vastly different from country to country. In my home it means that I treat prophylactically, and when I get an injury I infuse more. There is still pain and swelling, and even a few days on crutches, but it gets better. My pain is only temporary. This is pretty typical for most hemophiliacs in the U.S., and other developed nations.

That isn't the case for many others around the world. In fact, about 25% of the world's hemophiliacs use over 75% of the medication. Treatment isn't available to most people with bleeding disorders in developing nations, and their suffering and pain don't end. I've witnessed the pain first hand and it's crushing to know that these young men and women with bleeding disorders have so much to overcome. I often feel a sense of "survivor's guilt" that I was fortunate enough to be born in the United States and have access to treatment, while so many others were never afforded that opportunity. I feel even more guilt during those moments when I loathe having hemophilia due to pain from a bleed.

The only way I have found to tolerate this guilt is to harness it. Use it to help educate others about the disparity in care, and to help reduce that disparity. I think of how strong our bleeding disorder family is and hope that when united, we can continue to make a difference around the world.

Thankfully we already have organizations helping in developing countries. Save One Life, The World Federation of Hemophilia, and the Novo Nordisk Hemophilia Foundation already have well established and effective programs. But these programs should just be stepping stones for more. As a community we can demand more from manufacturers and from ourselves: to create factor donation programs, to spread awareness about what hemophilia is really like, and to advocate for our blood brothers. Please support the above organizations in any way possible. Share our message, educate, and donate if possible.

I want to share an amazing video that my friend Patrick has produced for the World Hemophilia Federation. This video gives a tiny glimpse into hemophilia in the developing world and the everyday struggles their communities face. Let these young people linger in your mind and find your passion to help them. Let's spread awareness today that will undoubtedly make a difference tomorrow.

The Treatment for All video series shows what the WFH Humanitarian Aid Program is doing to address the global disparity in care for those who have a bleeding disorder. The lack of access to care and treatment in developing countries is an urgent and important public health challenge, as the cost of products to treat is prohibitively expensive for the majority of those affected with a bleeding disorder.

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Bleeding Disorder Awareness Month

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Bleeding Disorder Awareness Month

March was an incredibly special month for our community. This year Congress officially recognized March as Bleeding Disorder Awareness Month and the National Hemophilia Foundation kicked off the Red Tie Challenge to spread awareness. By wearing the red tie and posting and sharing photos they hoped to educate people about bleeding disorders including hemophilia.

To do our part for the Red Tie Challenge I decided to wear my red tie in one of my favorite places, the mountains! I hit up the slopes with my parents and we all decided to take turns rocking the red tie down the slopes! We had a blast and I'm sure we turned some heads with the tie flapping around our necks as we flew down the runs. It was an amazing day and I was happy to participate in the challenge.

The CEO of the National Hemophilia Foundation Val Bias said it best, "Since blood ties—embodied in the color red and the tie—are what bind our community together, the red tie is our new symbol. The color red also conveys strength, leadership, courage, determination and, above all, love—qualities and emotions that define our community." I couldn't agree more with this sentiment. As I have become more and more involved in this amazing community as see all those traits on a daily basis. It inspires me and has shaped me into the man I am today. 

 

In honor of Bleeding Disorder Awareness Month my family took part in the Red Tie Challenge on the slopes. Here is a video of my dad rocking the red tie!

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World Hemophilia Day

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World Hemophilia Day

April 17th is an incredibly important day to me. Today our worldwide community comes together to shine the spotlight on hemophilia. Hemophilia is a tough disorder to live with, not only in the developing world but everywhere. We are lucky enough to have factor here in the US and in other developed nations but it is still hard. We have inhibitors to deal with and still the pain of bleeds. The psychological toll is quite high as well. We deal with people babying us, telling us what we can't instead of encouraging us to try. In the developing world the struggle is much more difficult. Many don't even know what is wrong with them and are in constant agony. They have little to no hope to get factor that will alleviate pain.

I am very fortunate to live the life I do with hemophilia and raising awareness for hemophilia worldwide is exactly why I do it. The disparity in care is immense world wide and I hope I can help to change that. Through my climbs I hope that people are inspired to try for more. Not everyone can literally climb mountains (or even wants too) but everyone has a dream. Maybe it's to become a world famous painter or in the developing world just to have access to factor or stay in school. It's possible!!! Shoot for your goals and surround yourself with people that believe in you because it's totally possible!

Today like most days I also think about those that inspire me with hemophilia. They are everywhere! I wouldn't dare try and list everyone here because that list would be long and I would hate to leave anyone out by accident. They live here in the states and around the entire globe. While spreading awareness today for hemophilia and educating others let's make our community example of that kind of support. Today, with everyone supporting each other, more people will know about hemophilia and our struggles and successes. People will see how powerful a small community can be and hopefully that will inspire them to do more. Tonight the Colorado Chapter of the National Hemophilia Foundation is lighting up Coors Field in the middle of downtown Denver for World Hemophilia Day. Thousands and thousands of people will see this and hear the word hemophilia for the first time and that is amazing! I'm so proud to be apart of this community! Let's go out and change the world for the better!

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7 Days Until The Next Adventure!

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7 Days Until The Next Adventure!

I can't believe that the next adventure in my Seven Summits Quest is only 7 days away! I'm not looking forward to the ridiculously long flights but this climb is going to be amazing. This adventure also would never been possible without the help of LA Kelley Communications. We have partnered up for this climb and the dream continues!

Many people have asked if this climb is a fundraiser for Save One Life and in the sense of my Denali climb it's not. But since March is Hemophilia Awareness Month I am partnering with Save One Life for their Child-A-Day sponsorship program. Throughout the month of March, Save One Life will be posting children that are looking for sponsors with a goal of 31 new kids sponsored by the end of the month. Since the goal of my climbs is to raise more awareness for hemophilia, especially globally, I thought I would use this climb to highlight these wonderful young kids and hopefully find them a sponsor. As I report back from the mountain I will be featuring Save One Life's child of the day. With your help I hope we can sponsor more than the 31 children Save One Life is shooting for.

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Kenya 2013

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Kenya 2013

Jambo from Kenya! I have been having a hard time writing a blog post about my time here in Kenya. There are so many incredible stories, I hardly know where to begin. Overall, the lab that I have helped set up here is running amazingly well! They have been running bleeding disorder screening tests and factor assays on a consistent basis, but more importantly, accurately! They have been working hard to make sure all the results going to the physicians who are seeing these patients are the best possible. I am so proud of how far this has come in the few years we have been here. We are still working on the tally for how many patients we have lab-confirmed hemophilia diagnoses, but it is approaching the 200 mark with almost 500 possible patients identified. We still have a long way to go to diagnose the 2,700 presumed hemophiliacs in Kenya, but what a start!!

It's been so great being able to see the first infusions for some of these guys and personally knowing the kind of relief factor can bring to a bad bleed. I love that we are able to give that to these guys, but an issue that is all too well known in the states is now beginning to rear its ugly head here. Today we confirmed in the lab, probably for the first time in Kenya, that a young boy has an inhibitor. Talk about an emotional roller-coaster. I was really excited that our lab can now identify inhibitors, but what will this boy do now? He is already fighting an uphill battle struggling to survive with this condition and now you throw this on top. I’m so glad we were able to identify, it but I am truly worried about this boy.

Today also brought the diagnosis of severe hemophilia A in two more boys. One came back to the clinic today where I saw him struggling to use his new crutches. His left knee was massive and he hasn't been able to stand for months. He had been carried by his mother the entire time and his body had slowly degraded. As he struggled to move to his wheelchair, I could see the pain in his eyes. I know that pain, or at least close to it, and I desperately wanted to be able to take it away. It’s times like this that I feel undeserving and confused. Why do I get to be healthy and mobile and able to travel the world when this amazing, resilient, inspiring young boy suffers? I know the answer is simply that I was born in the right place, but it doesn't take the feelings away.

The greatest pride I have in this amazing program is that we can help, and are helping. The care is in no way close to that we have in the states, but it is improving exponentially. There are some incredible people here that I am proud to call my friends, and that donate their time to help my blood brothers. I am so thankful for these people.

I know this has been an emotionally charged post but I had to let loose. On a lighter note, I want to tell you another story about the boy struggling with crutches. Apparently when the word crutches was mentioned he didn't want anything to do with them, but when Chris and Tiffany, program director and physical therapist respectively, brought in the bright, shiny, brand new crutches he was all about it! He finally felt he independence of being able to stand and move on his own after months of relying on others to carry him. It was a huge step for him and hopefully he will keep making be steps, figuratively and literally.

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