Mt. Rainier Status Update

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Mt. Rainier Status Update

Here is a quick update about our attempt to climb Mt. Rainier. Not what we we're hoping but I believe that it's the right decision.

Quick update on the status of our Mt. Rainier climb.

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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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Meet James DeFilippi!

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Meet James DeFilippi!

Like many of us with bleeding disorders James DeFilippi remembers doctors telling him, “You can’t do this, you can’t do that.” And like many of us he felt like that had a huge impact on his mentality. “For me, for a long time, I felt like I had something to prove,” James reflected. It is that drive and that mentality that  has helped him successfully finish 40+ triathlons, 2 IronMans, a handful of marathons and a selection to represent Team USA in the 2014 Olympic Distance Age-Group World Championships.

His journey with mild hemophilia began with a diagnosis at birth after his older brother was diagnosed a few years earlier. In retrospect, his grandfather probably had mild hemophilia as well but was never diagnosed. James describes himself as a rambunctious kid with bleeds happening around once a month. He also was unfortunately infected with Hepatitis C through contaminated factor. He had to fight through Interferon treatment in his early teens, “It was brutal, absolutely brutal” and thankfully he cleared the virus.

College was a huge turning point for James as far as controlling his hemophilia. He was on the rowing team in high school and when he joined a division 1 rowing team in college his access to strength coaches and trainers changed his perspective. His trainers took time to understand his condition and adapt his training for it. “It kept my joints stronger and more mobile to avoid injury” a philosophy that he still lives by today as he follows his new passion of running, cycling and competing in triathlons.

Training for triathlons is a lot of work and James knows he has to #playitsmart in order to compete at the level he wants. “I started small and worked my way up to longer distances, and I’ve been able to go very fast at triathlons … but it’s because I spend the time to do the strength and flexibility work and I am kind of careful to go to the edge but not go past it regularly.” Being fast at those triathlons has lead to him joining an elite amateur triathlon team called Team Every Man Jack. Being a part of such an amazing team provides James the opportunity to be surrounded by the nation’s best amateur triathletes.  In addition, James has a professional triathlon coach who understand his personality and his bleeding condition, and tailors plans regularly for him, to ensure he is ready on race day, no matter what the setback. He is open about his hemophilia with his teammates, but doesn’t typically lead with it. “I want to be considered for my athletic abilities first and second for having a bleeding disorder.”

James also believes that being successful physically with hemophilia is in part due to making smart choices in what sports we choose and how we approach them, something I agree with fully. “I literally believe that you can do anything you want if you have hemophilia, it’s just a matter of understanding consequences and being willing to deal with it.” James tells me. We both agree that you have to take ownership of your condition and your health. James is an amazing role model for this but he is also quick to point out others in our community that are incredible role models. “You look at somebody like Barry Haarde, who’s an older guy who’s had issues in his life but now is riding his bike across the country and now there are guys trying to row across the Pacific Ocean and climb the Seven Summits! The more people like that out there, that are showing other people what’s possible, then I think more people will understand how to pursue their dreams and find success and fulfillment.”

James so fervently believes in this message that he started his own not-for-profit with his siblings and a friend called ST3: Strive Today, Transform Tomorrow that will help support individuals that are chasing amazing dreams. This year ST3 is supporting Barry Haarde’s fifth ride across the country. “My goal is to support people who are doing things that push the limit but also people who are doing that in a responsible way and are being role models for the community.”

James is also going to have a busy year competing. He just completed the Boston Marathon for the 3rd time, will be running the New York City marathon for 1st time, compete in 6 triathlons and is also climbing Mt. Rainier like myself. I can’t wait to hear how all his competitions go and to follow his incredible journey!  If you want to keep up with James, please check out the blog on the ST3 website (www.strivetoday.org) or the ST3 Facebook page (www.facebook.com/ST3Transforms), where he will post recaps of his adventures!

To follow my Mt. Rainier climb stayed tuned on May 23rd and be sure to follow me on social media and twitter for updates and pictures.

James after finishing the Almanzo 100, a 100mi all gravel road race in southeastern Minnesota

James after finishing the Almanzo 100, a 100mi all gravel road race in southeastern Minnesota

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Happy Mother's Day!

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Happy Mother's Day!

This year on Mother’s Day I want to share a story about my mom. Moms have a special place in our hemophilia community. My mom spent countless nights with me in the emergency room and at our treatment center helping get me through bleeds and infusions. She always wanted to protect me and keep me safe but at the same time, she let me live the life I wanted. I’m sure this was a struggle and gave her anxiety, she tells me that all her grey hairs are my fault, but I have to say, I’m really glad she faced her fears and let me live my life.

Since I began my Quest for the Seven Summits I know more of those grey hair have popped up. The anxiety of waiting to hear if I safely made it to the summit of some of the craziest peaks in the world must be unbearable. I don’t think my mom really understands why I want to climb these peaks and what drives me. Honestly, I don’t think most people get it. They see all the dangers and exhaustion and don’t understand how a sane person would want to put themselves through that.

That was until last summer when my mom and dad climbed a 14’er with my wife and I. Colorado is home to some amazing scenery, fantastic wildlife, and 54 mountains over 14,000 feet high, affectionately known as 14’ers. The peaks range from easier hikes to multi-day backpacking trips, but nothing is really easy about getting to the summit of a 14’er. We decided on climbing Mt. Bierstadt, one of the beginner climbs. 

Starting our climb just after sunrise, we went slow to prevent altitude sickness, took a break every hour to drink water and eat some food, and I explained some techniques to make the climb easier. As we approached the summit, the terrain became a rock scramble and finding the trail was a bit more difficult. I went ahead and tried to pick the easiest path. Before we knew it we arrived at the summit! It was such a great experience! Seeing the excitement on my parents’ faces let me know that they understand why I climb…at least a little more . 

We had to leave the summit shortly after arriving and eating our lunch. The notorious afternoon thunderstorms of Colorado were building to the west and I could tell they would reach us soon. I didn’t want us to be above tree line when the storm hit and the lightning came. We would have no where to hide and could be dangerous. As we started down the mountain we ended up hiking in rain and hail, but we missed the lightning. It was a relief to get back to the car and relax and as we drove back to Denver and reflected on the climb.

Having a burger and beer after climbing is always a treat, but chatting with my mom and dad after the climb was amazing. My mom said “After seeing you on the mountain and how safe and aware of your surroundings you are, I am much more comfortable with you climbing.” That meant the world to me. I always tried to explain that I am smart on the mountain and not taking any unnecessary risks; however, it was more fun and impactful to show her! 

As I prepare to climb Mt. Rainier, and the rest of the Seven Summits, I know my mom is worried about me and my safety. I get that. It is my hope that she can now relate to my climbing. She has seen the draw that I have towards the mountains and the connection I have to these incredible places, as well as the personal challenges. She as experienced first hand the rush and sense of accomplishment climbing can give a person. And even though I know it’s hard for her, I know she is proud of me.

I never would have made it where I am today without my mom. We had our ups and downs but I thank her for everything she has done for me. It takes really strong people to raise someone with a chronic condition, and I feel guilty at times for all the stress I have caused her.  Thank you mom for believing in me and allowing me to become the man I always dreamed of being. I love you and Happy Mother’s Day!

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First Hike in 3 weeks! Rainier here we come!

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First Hike in 3 weeks! Rainier here we come!

This past weekend was supposed to be filled with some major Mt. Rainier training but Mother Nature had others plans. Colorado was hit by a storm that dumped snow in the mountains and even some in Denver. Our plan was to climb a couloir, a steep narrow gully on a mountain, but with all the fresh snow, avalanche danger was a bit too high for us to feel comfortable. 

I was disappointed but it might have been a blessing in disguise. My leg wasn't ready for a big climb. I just started walking comfortably earlier in the week so pushing it now could've been bad. Instead of our big climb I was determined to at least get outside. Despite some very wet snow coming down we had a great hike at Lost Creek. 

It's amazing what being in nature does for me. Although I was slow and hesitant with my movement I was excited to be outside in nature and even more determined to get my leg healed and ready to do more! I'm hoping to get some more hikes in this week and I look forward to sharing it with you all soon!

On Saturday I was able to hike for the first time since my hamstring injury and bleed. It was an easy hike which was a great starting point for healing my leg. This hike was not only a great place to start to improve my physical health but also mentally.

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Thoughts on Hemophilia; The Hard Times

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Thoughts on Hemophilia; The Hard Times

The last few weeks have been tough for me. Recovering from an injury and bleed have a huge impact on my mental health. I wasn't quite sure how to share my feelings in a blog post so I wanted to share it through this video. It's easy to share the successes we have with hemophilia but the reality is that it's not always easy, sometimes it sucks. 

Just wanted to share a few thoughts about my experiences with hemophilia. I've been struggling with an injury and bleed lately and wanted to share the tough moments, mentally and physically that come with hemophilia.

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Row for Hemophilia: Meet Jacob Pope and Christopher Lee

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Row for Hemophilia: Meet Jacob Pope and Christopher Lee

Imagine rowing a boat from California to Hawaii, a journey of almost 2,500 miles across the dangerous and unpredictable Pacific Ocean. Now add in the thrill and stress of competition. AND the fact that one man on your two-man crew has hemophilia. Seems a little crazy, right?! I thought so too. But Jacob Pope and Christopher Lee don’t think so. They plan to complete this amazing feat this summer and hopefully out-row the 11 other teams they will be racing against. I spoke with Jacob and Chris a few weeks ago to get the rundown of how they came up with this amazing idea and how they are preparing to complete such an arduous task.

Jacob wasn’t diagnosed with hemophilia A until the age of seven when a fall in a creek led to massive swelling in his hip. Being in a rural area doctors didn’t think about hemophilia being the culprit of the swelling and ended up having surgery to remove the hematoma….when they didn’t know he had hemophilia! They then inserted a tube to drain the blood...and still didn’t think of hemophilia. Finally Jacob was transferred to another hospital where he finally found out he had hemophilia.

Despite his rough start with hemophilia Jacob was still able to explore different sports and found a love for tennis and swimming. He wanted to stay active and hemophilia wasn’t going to hold him back. This love of being active stayed with him as he headed for college. Jacob had never been into rowing before but an opportunity to join the rowing team appealed to him. He gave it a shot and was hooked!

That’s where he met Chris Lee, another rower with an incredible dream. They had both walked onto the University of Georgia’s rowing team almost three years ago and Chris didn’t know about Jacob’s hemophilia until they were roommates at the national championships. Chris walked in to Jacob infusing, “I was really confused and thought it was weird.” Chris recalled. “I remembered hearing something about Jacob having a disease but I didn’t really think about it until that point.”

Chris had heard about the Race Across the Pacific and thought Jacob would be a perfect teammate, hemophilia or not. “When Chris first asked if I wanted to spend the summer rowing a boat across the ocean I said ‘No way!’ but it stuck with me. I did more research and learned what it entailed and told him I was in.” Jacob recalls. And this decision is where the journey began.

Jacob and Chris testing out the boat they will row across the Pacific!

Jacob and Chris testing out the boat they will row across the Pacific!

After speaking with Chris and Jacob, I can see my mentality preparing for my climbs in them as well. One big thing that I constantly tell myself is “Whatever your excuse is, it’s time to stop believing it”. Jacob and Chris have some insane hurdles ahead of them, plus the hemophilia, but they are determined to succeed. Jacob is still planning how to carry enough factor on the tiny boat, keep it from getting to hot, and infusing on a ridiculously bumpy ocean but Jacob is positive, “There’s a way to do it if you’re smart about.” Having a teammate like Chris makes the challenge easier. “This does give me some fear but it’s one of those challenges that we can strategically and logistically overcome.”

Their biggest challenge might actually be before the race even begins. They have been training intensely, modifying their boat for factor storage, learning the ends and outs of navigating the ocean. All things that training can prepare them for but even getting to the race is where they need some outside help. Our help! Jacob and Chris are struggling to raise funds for their challenge and it’s coming down to the wire. Please support these two on their worthy journey by clicking here and sharing! Lets help these guys make history and show how we can #playitsmart to the world!

Row for Hemophilia is a fundraising campaign benefitting Hemophilia of Georgia and research for a cure. Jacob and Chris are University of Georgia students who are on the rowing team and have a connection to hemophilia and to Hemophilia of Georgia.

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Mount Rainier

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Mount Rainier

Despite my recent hamstring injury, I will be climbing Mt. Rainier in less than 30 days! Mt. Rainier is the tallest mountain in Washington state and one of the most dramatic peaks I have ever seen! Rainier is over 14,000ft tall and what makes it more dramatic than the 54 mountains in Colorado over 14,000ft is that it starts close to sea level. On a clear day you can see Rainier towering over the Seattle area and I’m really excited to climb this peak!

Although this isn’t one of my Seven Summit climbs it will have tons of amazing challenges. My wife Jess and good friend Steve will be climbing with me and we won’t be using guide! We have been preparing for months and we are itching to go! We are heading for the mountain May 23rd so keep your eye out for posts from the trip and as we train before the climb!

The goal is to climb to Muir camp on May 23rd. This camp is located on the Muir snowfield at 10,080ft. We are hoping to start very early that morning and arrive around noon at camp. We will set up camp and try and get as much rest as possible. If the weather is looking good we will head out shortly after midnight on May 24th up the Disappointment Cleaver Route for the summit. We will have to ascend over 4,000 vertical feet in order to reach the summit. This will probably take us between 6-8 hours. Once at the summit we will descend back to Muir camp. If we are all feeling awesome we will pack up camp and head back down to the base! 

There is a countdown to the climb on the homepage and keep checking back for more updates!

This is the Disappointment Cleaver Route that we will be climbing!

This is the Disappointment Cleaver Route that we will be climbing!

 

 

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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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Meet Barry Haarde!

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Meet Barry Haarde!

This week on #playtismart, I’d like to introduce my friend Barry Haarde to our #playitsmart campaign. Barry is a dedicated cyclist and fundraiser. So far, in his career, he has ridden his bike across the United States FOUR TIMES and raised over $150,000 for Save One Life. Those feats alone are pretty incredible, even more so when you learn that Barry has completed them with severe hemophilia, HIV, and Hepatitis C.

I met Barry in 2013 at the end of his second ride across America, shortly after I completed my Aconcagua climb. We had both just finished amazing physical feats but our journeys were drastically different.

Unlike hemophilia today, Barry was born before factor concentrate. Life before factor was extremely difficult. For Barry, each bleed meant driving over an hour to the closest Hemophilia Treatment Center (HTC) where he would have to be admitted and treated on site. Once factor finally became available, treatments shifted to Barry’s home and life was more or less normal. Hemophilia was easier to manage, at least.

But convenience came with a cost. At the time, factor concentrate was made from large pools of donated plasma. This “miracle drug” that the hemophilia community was so excited for was often tainted with HIV and Hepatitis C. Over 10,000 people with bleeding disorders lost their lives due to this contamination. Barry was among those infected; his brother, sadly, among those that lost their lives.

Even before he was infected, Barry struggled with being active. Sure, the factor made it easier to treat a bleed but it didn’t mean those bleeds were any less painful. As anyone with hemophilia knows, it can be very easy to feel incapable of participating in your life for fear of injury. “In my 20’s and 30’s I was a confirmed and documented couch potato,” Barry recalls.

It wasn’t until a desperately needed knee replacement that Barry even considered cycling. “My doctor told me I needed to build some muscle around my knee before the surgery so recovery would be easier and he suggested biking for that.” He struggled to complete 25 miles in those days but after a successful knee surgery and months of rehab, he realized he could bike more without having knee bleeds. “For the first time in my life I could be an athlete and get away with it! I was looking forward to doing longer multi-day rides.”

Just a few years after his knee replacement, Barry’s brother passed away and Barry found out he had cirrhosis of the liver from Hepatitis C. This was devastating for him. Years of difficult treatments kept him off his bike and threatened to crush his newfound athletic spirit. But Barry refused to be a couch potato again. He finished his treatments with a vengeance and a newfound goal: to ride his bike across the entire United States!

Here is where our stories align. Like myself, Barry wanted his achievement to be about more than personal achievement. He wanted to do something great and challenging to raise awareness for those living with hemophilia around the globe. Similarly, I wanted to share the hardships and victories of those within the bleeding disorder community and support their journey through feats of education, endurance, and empowerment. Combined, Barry’s rides and my climbs have been in support of Save One Life, an international hemophilia non-profit, and raised a total of over $200,000!

Barry is nowhere close to being done - and neither am I.  His biggest undertaking is coming up this summer. He will, once again, be riding his bike across the country but this time he will not only go west-to-east but also north-to-south covering over 5,000 miles. 5,000 MILES!

Barry is able to #playitsmart while completing his incredible goals with great preparation. He begins training months before his trips begin, starting out slow with shorter rides and gradually increasing the distance and frequency. He also always has factor with him in case of an emergency- like on his last ride across America when he was hit by a car. Fortunately, since he played it smart, he was able to get treatment quickly and keep going.

And that’s typical Barry, never letting an accident or misfortune keep him down for long! Keep it up, buddy! You can support his amazing adventure here.

Barry Haarde, an adult man with severe hemophilia, HIV, and Hepatitis C, shares his story about growing up during a time when treatment was limited, and about the many challenges he and his family faced.

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Hemophilia Federation Annual Symposium

Hemophilia Federation Annual Symposium

This last weekend I was fortunate enough to be invited to speak at the Hemophilia Federation of America's Symposium. Not only was this my first time to the meeting but my first time speaking in front of several hundred people! 

To be honest, public speaking is really nerve racking for me. It's gotten better over the past few years as I have been able to share my story more and more but in the minutes before I go on stage I still feel like I'm going to lose it.

This time was no different except for what happened on stage. I calmed down quickly and really felt the support in the room. It's probably partly because I'm getting more accustomed to it but also because the room is full of my family, the bleeding disorders family.  There is something indescribably special about.

During my talk I ask people to think about their goals and dreams, "What's your Everest?" I asked. Then everyone was told to write their goals on a piece of paper to remind them to take steps towards that goal. The next day a man came to me with his piece of paper, he wanted me to sign his goal. What I said connected with him and he wants to reach for his goal. It felt incredible and I hope that I inspired some others to do the same.

If you happened to be at my talk, thank you so so much for coming out and listening. I also want to thanks to everyone who took a minute to stop by that night or throughout the rest of the weekend to introduce themselves to me. It was great meeting so many new people and hearing all your stories!

What I truly love the most is connecting with friends I haven't seen in awhile, laughing, and being inspired all over again! HFA's theme was "Together We Are Resilient" and that was a repeating theme throughout the weekend. We all have a unique story but together we can overcome anything! Can't wait to go to my second HFA next year in Providence, Rhode Island! 

Meet Misty Diaz!

Meet Misty Diaz!

Misty Diaz, aka Lil’ Misty, is an adaptive athlete and motivational speaker. She has completed over 110 different races including 5k’s, 10k’s, half marathons, and Spartan races. And she was born with Spina Bifida. To me, Misty is the epitome of strength, determination, and drive.

Spina Bifida (latin for split spine) is a birth defect where there is an incomplete closing of the backbone and membranes around the spinal cord. Misty had many operations within the first 3 days of her life and has been through 28 surgeries to date. It hasn’t been easy but she attributes her success to one simple rule: Don’t listen to people when they say you can’t.

As we spoke, I found a kindred spirit of sorts in Misty. Our experiences, while different, were remarkably similar. We both felt betrayed by our bodies and struggled for years to figure out how to overcome the challenges presented to us- not just the physical but the emotional as well.

Neither of us were connected with a community growing up. “I didn’t know anyone growing up with Spina Bifida, and didn’t meet another person with it until I was 20.” Misty told me. That feeling of seclusion, paired with bullying in school and the pain of 20+ operations led to an addiction to painkillers and a reliance on antidepressants. I,too, felt extremely alone with my hemophilia and hated it at many points in my life. I hated infusing and hated it even more when I had bleeds and had to sit on the sidelines. I couldn’t understand why I had to struggle when my friends seemed to have it so easy. I denied my depression for years and years.

“There’s always a moment in life where you can either keeping going down the same path or you can stop, start over, and try things you have never done before.” -Lil’ Misty

For me, that moment was when my Uncle Dave took me climbing for the first time. I had finally found an outlet where I felt truly alive and like I could excel and I knew I didn’t want to stay on that sad and angry path that I had been on for so long.

As I’ve found acceptance in the hemophilia community, my confidence has grown and with that, so has my success. Both my Uncle Dave and my climbing guide, Ryan, have pushed me to do things I never would have considered before (the Seven Summits challenge!). They acknowledge my physical challenges but don’t allow them to be excuses. They’ve taught me how to push past my mental barriers for incredible physical outcomes.

For Misty, that moment was the day she decided she wanted a different life. One without a constant fog from pain pills and depression. She started slowly by just getting up and walking to the mailbox. Then down to the beach three blocks away. As her depression waned, so did her desire to take painkillers. Misty started looking at the challenges of her condition differently. Her thoughts changed from “I can’t,” to, “Why can’t I, I don’t care how hard it looks I’m going to find a way to get it done, even if it’s an adaptive way!”

Like me, Misty didn’t do it all alone. She had a mentor who never never looked at her and saw a condition but instead saw heart and drive. Mike Ainis came into Misty’s life as she was struggling to train for a half marathon. She proved to Mike and herself that she was committed to her goal and completed the 13.1 miles and immediately wanted another challenge, a Spartan race! If you have ever seen a Spartan race, you know it’s an exceptional event. There is fire jumping, rope climbing, wall jumping, and so much more. Mike jumped on board believing it was possible and has encouraged Misty in the 38+ Spartan races she has competed in since! She even holds three adaptive athlete world records in the Spartan race!

After hundreds of races Misty isn’t done…not even close. She is always searching for her next big challenge. And true to form, her next one is pretty wild, the Red Bull 400! It’s basically a 400m sprint up a 36 degree slope! Her philosophy to prepare and #playitsmart, “I know it’s going to be hard so train hard!” Words to live by!

Make sure to check out Misty’s website and facebook page to keep up with her adventures!

 

Misty Diaz, spina bifida runner and Live Ultimate athlete, shares with us how she lives ultimate! How do you Live Ultimate? Share your story. liveultimate.com

Purpose to Play

Purpose to Play

"'That’s where a lot of my passion for non-profit work I do comes from. It’s just to help in any way I can to improve the care [the young boys] receive, which right now is nothing,' Bombardier said."

Purpose 2 Play covers my international volunteer work, how I got started in mountaineering, and my most recent summit, Carstensz Pyramid! Check out the article here.

Purpose 2 Play is THE place to go if you want the positive and inspiring stories in sports. They cover athletes, coaches and fans at all levels of play, and portray what they're doing to make the world a little brighter. So dive in, go below the surface hype, and discover some extraordinary heroes. These are the sports stories that deserve to be told.

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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The #playitsmart Initiative

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The #playitsmart Initiative

I find inspiration in many places especially within our hemophilia community. We hear about struggles that we can all relate to and how so many in our community have overcome them. I love those stories and I hope through my endeavours in climbing the Seven Summits I can inspire someone to pursue their unimaginable goal, to overcome their obstacle, and create confidence in themselves. I want to have people ask themselves, “What’s my Everest?” and shoot for the unthinkable dream.


Through the #playitsmart initiative I want to share my experience on how to overcome mental and physical challenges. I want to encourage everyone to pursue their goals in a SMART way, one step at a time until they find their Everest. My journey is just one example of overcoming challenges. There are hundreds within the bleeding disorders community and I will be highlighting them in the future. But what about others struggling with chronic conditions? We aren’t alone with the struggles we share. I believe each person’s story gives a new opportunity to learn. For my first #playitsmart post, I want to share with you an incredible story of an inspiring woman - who - although lives with a very different condition, has overcome her physical and emotional barriers in much the same way I have and others have in the bleeding disorder community. Check back later this week for that post!

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One Year Since Carstensz Pyramid!

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One Year Since Carstensz Pyramid!

I can't believe it's already been a year since I summited Carstensz Pyramid in Papua, Indonesia. This mountain was a fairly technical climb as you can tell from the video. From our basecamp we climb the nearly vertical peak and traversed the ridge line. The views were breathtaking as were some of the obstacles along the summit ridge!  

 

Shot at basecamp showing the route up Carstensz Pyramid in Papua, Indonesia. This is the highest peak on the Australasia continent and my fifth summit in the Seven Summits Quest!

The most difficult was the Tyrolean Traverse, (video below). I can't post the video of crossing the traverse on the way to the summit because I swear ALOT but here is a clip of me coming back down! This was a huge mental and physical challenge and I'm glad I could overcome it!

 

The Tyrolean Traverse is located at the start of the summit ridge on Carstensz Pyramid in Papua, Indonesia. Although very safe it's still freaky!! It's hard to convince yourself that the wires will hold you over the thousand foot drop!

The mountain was spectacular but the most memorable part of the trip was trekking out through the jungles of Papua. We had local porters that helped carrying our gear and show us the way through the jungle. It was incredible to spend time with them in such an untouched wilderness! I have loved all the mountains I have climbed but Carstensz and Papua were unique and special!

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New Website, New Concept, Same Me!

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New Website, New Concept, Same Me!

Hey all, with the help of my good friend Justin Levesque we have revamped my Adventures of a Hemophiliac site! This site has some fresh and fun changes but the biggest one being the addition of my #playitsmart campaign! Over the years, my climbs have grown into something big. They have become a way to generate awareness for the bleeding disorder community, so I'm taking it a step further! 

#playitsmart is a campaign I initiated to help change how those with chronic conditions set and achieve goals! To learn more, please visit my #playitsmart blog page.

“WHATEVER YOUR EXCUSE IS, IT'S TIME TO STOP BELIEVING IT!”

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