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Thirty Years of Education and Innovation!

It started with the birth of a baby with hemophilia, then a book… and a company was born. Thirty years ago I founded LA Kelley Communications to meet the need for information about hemophilia from a parent’s point of view. In 1990, there was no book on hemophilia to help parents master raising a child, no newsletter geared towards them, written by parents, no children’s books about hemophilia, and of course, no internet, social media… heck, we didn’t even have cell phones!

Some of you might recall our first logo!

We were all pretty isolated, and the national community was busy battling the drug companies and government about the HIV scandal. I decided to create the educational materials I needed, and share them with other families. And we’ve been doing that ever since!

Next week I’ll share the actually beginnings of our company and work, but for now, did you know we hav a long list of firsts in the bleeding disorder community? They are listed below…. and all of our sponsored books and newsletters are free to families… and they always have been for 30 years. Congratulations to us!

We provided the:

Or maybe our second logo?

• First patient-run hemophilia consultants (1990)

• First US hemophilia parenting book (1990)

• First VWD Book (2004)

• First parenting/consumer newsletter (1990)

• First children’s books (1992)

Our international
leadership program

• First and only book on inhibitors (2002)

• First quarterly e-newsletter (2000)

• First dedicated blog: HemaBlog (2006)

• First leadership training programs (1996)

• First direct-to-consumer marketing (1996)

• First private international factor donation program (1996)

Next week: How it all began!

Prepare for Big Changes

When we use the word “transitions” in hemophilia, we normally think about our child’s life cycle (or our own) and how it impacts healthcare: Children transitioning into adulthood at age 18 need to see an adult hematologist, not a pediatric hematologist. Adults finishing college or trade school need to transition into the workforce. Adults at age 26 need to transition off their parents’ health insurance. We may have joint issues as we age.

But we can also view transitions as something happening to hemophilia treatment, because that has a life cycle too. And right now, hemophilia treatment is undergoing massive, rapid change. New products, novel therapies, and gene therapy…can the US market of roughly 20,000 with hemophilia support all the products? Will insurance cover them all?

A Look Back: Our Infancy

If we accept that hemophilia treatment has a life cycle, let’s look back at its infancy and development. Early treatment for hemophilia involved whole blood transfusion and later, human plasma. Fresh frozen plasma (FFP) allowed treatment to be stored and then thawed when needed. Whole blood and FFP were both only marginally effective at controlling a bleed, due to the low level of factor VIII and large volumes that needed to be infused. Then, in the mid-1960s, came cryoprecipitate: rich in factor VIII, and created from thawed human plasma. Its higher factor VIII level in a smaller volume made administration easier, faster, and more effective.

A breakthrough came with commercial clotting factor concentrate in 1968, made from donated human blood or blood plasma. This new plasma-derived concentrate was freeze-dried and reconstituted with water when needed. Factor in a bottle! Now treatment could be done at home or away, freeing patients to travel and live more normal lives. Infusion time was tremendously shortened, meaning treatment could stop bleeding faster, reducing pain and helping to prevent joint disease. But these early factor concentrates were not treated to inactivate viruses. Tragically, in the late 1970s and early 1980s, contamination of the nation’s blood supply from donors infected with HIV, hepatitis C, and other viruses meant that clotting factor was also contaminated. Thousands of people who had hemophilia and used factor concentrates were infected and died.

In the mid-1980s, a new stage in the life cycle of hemophilia treatment emerged: the creation of factor that was virally inactivated. Viral inactivation processes, such as heat or solvent/detergent wash, could destroy the fragile HIV. Today, all clotting factor is considered safe.

The deaths of so many led to another groundbreaking stage in the life cycle of hemophilia treatment: recombinant clotting factor. Recombinant factor is produced in a lab, using human genes that are inserted into genetically altered mammalian cells. In 1992, the first recombinant factor VIII clotting factor product (Recombinate, manufactured by Baxter) was approved by the FDA. In 1997, the first recombinant factor IX product (BeneFix®, manufactured by Genetics Institute) entered the market. And now? There are now about 20 recombinant factor products on the market to treat hemophilia. We’ve come a long way.

The Family Expands: Crying for Attention

Why so many products? There are some things to know about the factor market. First, the US is the largest market. Not in population—that would be China. But in dollars. Estimates are $4.6 billion annually.1 This lucrative market attracts competitors. But factor products are protected by patents. So to avoid patent infringement, changes or improvements are made to products, making them slightly different. Some of these changes have involved production processes; and the quest to remove unnecessary human and animal proteins gave us “generations” of recombinant factor products.

Now we have three recognized generations of factor products: First-generation products use animal blood proteins in the cell culture medium, and add human albumin, a blood protein, to the final formulation to stabilize the factor. Second-generation products stabilize the factor with sucrose, not albumin. Third-generation products use no added animal or human proteins, either during processing or in the final formulation.2 Today, all factor products except for Recombinate and Kogenate® FS are third generation. A special shout-out to Octapharma’s Nuwiq®, a recombinant factor VIII product that uses a human cell line instead of an animal cell line in its production process.

Recombinant products, by reducing the potential for viral transmission, are an improvement over past products. And yet first-generation products remain in use, as do plasma-derived products. So far, there seems to be a purpose and a place for all products.

Growth Spurt!

But consumers want more. Researchers found ways to keep infused factor circulating in the body longer, by extending its half-life—meaning fewer infusions and less burdensome treatment. Eventually, extended half-life (EHL) factor was created. After a relatively calm 10 years in the marketplace with what is now called “standard half-life” or just “standard” factor, EHL factor came along, resulting in a big growth spurt in the life cycle of hemophilia treatment. Hailed as the next best thing, EHL factor was and still is heavily promoted. Biogen created the first two EHL products, which were soon followed by EHL products from Baxter (now Takeda), Novo Nordisk, Bayer, and CSL Behring.

  The creation of EHL products seemed like the exciting, wild teen years for our community. Children with hemophilia lived even more normal lives, without infusing so often. Freedom!

Family Feud

In the midst of this growth spurt and innovation, some major shifts were taking place in the hemophilia marketplace. Companies were separating, divorcing, getting married, taking on lovers, adopting other products. Baxter split off its biological division (which made its factor products) to become Baxalta. Genetics Institute was bought by Wyeth, which was then bought by Pfizer. In the early 2000s, Bayer had divested its plasma division, which became Talecris. Then Grifols bought Talecris (you can still see the primary color bar on the Koate®-DVI box, the same bar that appears on Kogenate FS). Biogen, soon after launching its groundbreaking EHL products, suddenly divested its hemophilia group, which became Bioverativ. Soon after the new sign was up at Bioverativ’s headquarters, it was bought by Sanofi Genzyme. Baxalta must have been a very attractive mate, because soon after it was spun off by Baxter, it was snatched up by Shire, an Irish pharmaceutical company. Just when everyone was getting used to Irish brogues, Shire was purchased by the Japanese company Takeda, a pharma titan.

 Perhaps no products have changed hands more than those of CSL Behring, starting in the 1980s, when it was Armour Pharmacuetical. And although CSL Behring has remained the parent company since 2007, it has recently abandoned some hemophilia products: Helixate® FS and Monoclate-P®. Its focus is now on EHL products only for hemophilia.

And this is the concern for the future life cycle of hemophilia treatment: Can the market sustain 20 recombinant products? Which products will be removed next from the marketplace? Will product change come from the consolidation of companies buying each other and reducing overlapping product lines? Will it come from flagging sales, if one product dominates the market? Or will product change come from a novel treatment—using no factor at all?

Newest Child

One product getting a lot of attention these days is the newest addition to the family—Hemlibra®, a nonfactor antibody product that mimics the action of factor VIII in the body. It’s used for prophylaxis in people with hemophilia A and inhibitors, and in those without inhibitors. The product’s clinical success has many patients cheering on Facebook, some advocates cautioning consumers to wait and see, and some doctors already prescribing it for newborns. Hemlibra is called a “market disruptor” for a reason. It’s created a whole new way to treat hemophilia: with weekly to monthly subcutaneous injections. And people with inhibitors are reporting no bleeds for weeks, even months in some cases. Will factor concentrate still be needed? Read Wendy Owens’s feature article in this issue to learn the answer!

The life cycle of hemophilia treatment has entered a new phase, perhaps similar to young adulthood, where there are many options, and our community has been educated and prepared. We’re ready for greater independence from this disorder, and ready to live life more on our own terms.

But like all young adults, we still need advice from our elders, from our blood brothers, from our physicians. And we need to do our own homework. We need to read about current products and new ones that will enter the marketplace. Do you feel informed enough to choose? Will your insurance cover all the new products? Will you switch to another product, if one day your insurance company no longer covers yours?

 Stay in touch with the life cycle of hemophilia treatment: name changes of the corporate players, which products belong to whom, and especially, the manufacturer of the product you use. Decisions at the top—by government, by corporations, and by insurance companies—may eventually impact your choice of treatment.

We have more freedom and more choices than ever before, but we need to exercise responsibility, by learning all we can. Because one thing is for certain: we are only in the young adult stage of hemophilia therapy. Prepare for more growth and more change.  It’s coming.

  1. Mark Terry, “A Look at Hemophilia Drug Prices and the Market,” biospace.com, July 3, 2018 (accessed June 2, 2019).
  2. Recombinate is a first-generation recombinant product. Kogenate FS is a second-generation product. Advate, Adynovate, Afstyla, Alprolix, BeneFix, Eloctate, Idelvion, Ixinity, Jivi, Kovaltry, Novoeight, Nuwiq, Rebinyn, Rixubis, Vonvendi, and Xyntha are third-generation products.

Pickin’ Up Blood Vibrations

Remember the Beach Boys? I passed up a chance to see Brian Wilson Friday night at a local venue, due to a persistent and stubborn cough I’ve had for 4 weeks! I heard it was a great show. Music defies the ages, and unites people from different backgrounds, countries, languages, and ages. I myself can play the piano and learned classical piano, but have never deviated from what’s on the written page. I truly admire those who create music. It is a gift.

And so I’m thrilled to announce that the talented artists at “Blood Vibrations” have released another Blood Vibrations album!  The music debuted last fall at the Blood Vibrations Listening Center as part of the Blood Work exhibition by FOLX (Justin Levesque) during the National Hemophilia Foundation Bleeding Disorders Conference in Anaheim. 

And true to being artists, there continues to be no money involved in the project. Blood Vibrations does not request or accept funding and they do not charge artists to submit work or people to stream the music. The artists are all connected to the bleeding disorder community. And some of their songs are amazing! They express their experiences, joy and pain through music.

You can, too. Contact Billy at Blood Vibrations and learn how to submit your recording!


Listen to Blood Vibrations: 8 (Blood Work Mixtape) now… with new sounds & visions from folks in the bleeding disorders community. This latest release in the series features an album cover by: Kennet Kaare and music by 

Bleeder, Campbell Hunter, Chayse Pannell, Cleaven Pagani, Creature-blossom, Joseph Burke, Jphono1, Kappa, Louisville Lip, Morgue’s Last Choice, North Elementary, Second Autumn, Sepsis and Synthetic Division

The Factors Within Album at
https://bloodvibrations.bandcamp.com/album/blood-vibrations-8-blood-work-mixtape

Spread the good news near and far! Submissions are accepted for future releases on an ongoing basis at 

bloodvibrations@yahoo.com
https://bloodvibrations.bandcamp.com/album/participants-creators

Leadership Lessons from the Andes

Iron cross at memorial, Valley of Tears, Argentina

On October 13, 1972, Uruguayan Air Force Flight 571 crashed at 11,710 ft in the inhospitable Andes, while bringing 19 young members of a rugby team, and their families and friends, to neighboring Chile. Thus began perhaps one of the greatest survival stories known. Amazingly, 33 of the 45 on board survived the initial crash, some with injuries that would later claim their lives. And 72 days later, 14 were rescued after two more of the survivors walked out of the Andes to find help.

It was a miracle anyone survived at all. Due to pilot error, the plane descended too early in dense cloud cover, and struck a mountaintop. The tail snapped off, then both wings were sheared off. What remained of the fuselage tobogganed down a steep slope and smashed into a mound on a glacier. Stunned, many in agony from wounds and shock, wearing only street clothes, the survivors sprang into action, displaying heroic teamwork.

I journeyed to the crash site on January 7, 2020, high in the Andes, accessible only by hiking or horseback, to pay my profound respect to those who perished. They are buried in a mass grave on a ridge near the crash site. There is also a makeshift memorial, with an iron cross, upon which people leave personal mementos. This story has touched millions of lives throughout the last 48 years, and only a few get to come here, to the “Valley of Tears,” to see the place where so much agony, sorrow, terror, solitude, struggle and leadership took place.

Leadership?

Yes, amazing leadership. In fact, what made the story at once famous and infamous in 1972 was the fact that the survivors were forced to eat the flesh of the dead to stay alive. But to me, this story was always one of leadership and teamwork, and the lessons learned from it are applicable to many situations, including hemophilia and bleeding disorders. I thought of our community often while in the Andes, and while reading the many books about the crash.  While there are many leadership lessons, I mention just a few here.

Leadership Lesson 1. Take action. Just seconds after the crash, those young men (some only 19 years old) who were not injured quickly rallied to help those who were. They triaged the sick and wounded so as to help those most in need.

Leadership Lesson 2. Establish a situational leader. Here, the natural leader, who was miraculously uninjured, was Marcelo, the captain of the rugby team. An immediate leader was needed to keep people focused and optimistic, and avoid hysteria. Marcelo, handsome, intelligent and commanding, was able to get people organized for the night, where temperatures were probably 30° below zero or more, block the fuselage hole with luggage to protect from the wind, and calm the group by discussing rescue possibilities.

Leadership Lesson 3. Use the tools at hand. The boys had nothing to prepare them to stay in the Andes. They wore light clothing, shoes. Luggage had been lost. But they made blankets out of seat covers, a water-maker out of metal sheets to melt snow, sunglasses out of materials from the plane’s windshield, to protect against snow-blindness, snowshoes out of cushions, and of course, food from the bodies of those who died.

Leadership Lesson 4. Form a community. Not all of the boys knew one another, and not all were rugby players. But they formed a community, calling themselves “The Society of the Snow.” And in this community, everyone had a role. They had a doctor (first year medical student), engineer (a 19-year-old with some experience), someone to make water, someone to cut the meat, and others to play various roles.

Leadership Lesson 5. Keep rituals. Despite the isolation and injuries, the boys kept up rituals, to provide a sense of normalcy. Every night, one of the boys started the rosary. A few of the boys were agnostic, but they joined in because it provided community and comfort. Even after the worst part of the entire ordeal, an avalanche on day 16 that killed 8 more of their friends and trapped them in a tomb-like environment for three days, they celebrated two birthdays, using a snowball and lit cigarette as a cake.

Leadership Lesson 6. Anchors. Anchors can be described as things we hold on to that give us mental stability and focus. Some boys looked at the moon every night, while shivering in the fuselage, knowing their loved ones were looking at the same moon. For Eduardo Strauch, who traveled to the crash site with us two weeks ago, it was the “Exit” sign on the plane, which oddly still worked and stayed lit at night. Each night he focused on it intensely, to remind himself he would escape. After he was rescued, he brought the Exit sign home with him. And of course, there is the little red shoe, symbolic of the entire event. (But you must read the books or watch the movie to learn its vital importance!)

Leadership Lesson 7. Be flexible with leadership. On the tenth day after the crash, the survivors learned from a transistor radio that the search had been called off. Marcelo, the positional and situational leader up till then, slowly despaired, and gave up his leadership position. His hopes had been dashed. Instead, three cousins—Fito Strauch, Daniel Fernandez and Eduardo Strauch—stepped in as provisional leaders and elders (at age 25, they were the oldest). Leadership became more consensual (group-like) rather than hierarchical.

There are so many more leadership lessons from this one event, 48 years ago. But these are the few that truly stood out during my visit. How many of these apply to bleeding disorders? An event that no one wanted (a plane crash versus a diagnosis). Situational leadership (uninjured versus young parents springing to action). Suffering (crash injuries versus bleeds into joints). Taking action (how to stay warm versus how to protect your child). Community (a group of boys stranded in the Andes versus a family with a bleeding disorder feeling alone). Communications (a small transistor radio versus internet, meetings).

There are so many parallels. Read the books and see for yourself, and be amazed at the human spirit, which has resilience, discipline, hope and faith.

Alive by Piers Paul Read

Alive (1993), movie now on Netflix

I Had to Survive by Robero Canessa

Miracle in the Andes, by Nando Parrado

Out of the Silence by Eduardo Strauch

Into the Andes

Part 1 of an adventure. Two years ago I set out into the Andes on horseback to visit the rustic memorial and ultimate site of the 1972 plane crash in the “Valley of Tears” deep in the Andes, that took the lives of 29 people. It was called “The Miracle of the Andes” because 16 did survive the most extreme and harsh experience imaginable. It’s been documented in many books, the 1993 movie “Alive” and many documentaries on YouTube. In 2018 I only made it to base camp, because of a bad respiratory infection. But because this story hit home, and stayed with me for decades, I knew I couldn’t accept my defeat. I returned again January 4, 2020 to Argentina, to rejoin Alpine Expeditions leader Ricardo Peña and wife Uly, and survivor Eduardo Strauch, and eight others to journey days and hours into the Andes, to see the crash site, to absorb the beauty of the mountains, to feel this unique and amazing experience. Here, I’ll discuss the trip itself. Next week, I’ll share thought about the “Alive” story and how it relates to leadership and hemophilia. Leadership has been on my mind lately, and in fact, in the February issue of PEN, we will discuss changing leadership and leadership challenges in 2020.

Andes Survivor Expedition 2020

You can’t be a leader unless you have someone or something to lead. On Sunday January 5, our new team all met up at 2:30 at the Hotel Raices Aconcagua, where we loaded our bags onto the bus. It was great to see Eduardo Strauch again, who I met two years ago. He gave me a big hug, and immediately said he wanted to learn more about my charity work in hemophilia. This was very kind, as he is a huge celebrity, and has met hundreds of people all over the world. In other words, his time, thoughts and energy is valuable and limited, and I was so pleased he was interested in hemophilia. Our new team consisted of five people from the US, one from New Zealand, one from the Netherlands and one from Scotland. All in all, it was a great team, and team dynamics showed themselves early on, in terms of who connected and how.

The next morning Monday, January 6, I had a quick breakfast at the hotel, and we started our trip to the Andes. This involved a two hour bus ride to a pit stop, a little restaurant we visited last time, with the same little dachshund puttering about! A few people recognized Eduardo, which was cool.

Eduardo Strauch, survivor

Then, off again for a two hour, very bumpy, grinding ride to the foothills. The ride was much rougher than I remembered. I did well, though, although I had picked up yet another respiratory infection just before leaving Boston, and was coughing the whole time and indeed, am still coughing as I write this blog.

We drove up the tight turns and rocky roads, where black rocks dotted the landscape with shocks of yellow straw-grass coming straight out of them, looking like so many surprised, stone-faced troll dolls.

Around 2:30 pm we reached the horse post, where Sybille, Victor, Juan and Veronica greeted us. They are our support team. It was late in the day to begin our ride to base camp at 8,000 feet, but we first had to have lunch. Sybille laid out a great lunch, and we munched on cheese, peanuts, olives, pickled onions, ham and soft drinks. Though Sybille put out wine, Ricardo forbade it as it is dehydrating. The Andes is extremely dusty and arid, and alcohol doesn’t mix well with altitude. Soon, we saddled up the horses and we were ready to head out for four days.

River crossing

The wind whipped us and the dust coated everything at once. We couldn’t speak, as the wind roared in our ears. It was nonetheless enchanting, to see the sloping sides of the Andes mountains climb upwards toward their pinnacles. The Cordillera de los Andes are the longest continental mountain range in the world, forming a continuous highland along the western edge of South America. The Andes are the second highest mountain range on earth, after the Himalayas. But no facts can describe their beauty, their majesty. Greens, golds, browns, tans… all colors seeping and weeping down from the summits.

¡Vámonos!

Across rivulets, up steep trails, then down steep, dusty paths which made the horses jolt and rock. Then across a pounding glacial river, which sank the horses up to their chests and caused them to step cautiously on the slippery rock bottom. We anticipated being pitched into the glacial-cold water, but they are surefooted and not one ever stumbled. Each of us was in our own internal world as the wind struck our ears. But by 7:30 pm we reached camp at last. The kitchen and mess tent were already set up; we got to work unpacking. I set up my tent with Uly’s help (Uly is a glacial geologist): a green Hornet by Nemo. I was excited to be back in a tent and in a sleeping bag, believe it or not. Dinner was at 10:30 pm, pasta. Eduardo welcomed everyone to ask questions–about anything. And this is significant, because his experience was so extreme in the annals of human survivor stories. I asked a lot of questions, particularly about the Exit sign he mentions in his book (I’ll share more about this next week).

My tent, dwarfed by the mighty Andes

Most people recall the 1972 crash of the rugby players for one sensational aspect: the survivors had to eat the bodies of the dead. There was no other option, except to die. While this is the trigger that makes mostly people recall the story, whenever you read the books, or watch the movie or documentaries, it is to me the least important aspect; it’s just a fact. What stands out to me is how the survivors adjusted, created a mini-society, supported one another… all things I will discuss next week. And indeed, just like two years ago, the topic of food source didn’t really come up. In fact, what surprised me most was when Eduardo said that throughout his whole ordeal—the subzero temperatures, the starvation, the altitude, the death of his best friend, eating the flesh of the dead—it was the chronic thirst that was most unbearable.

Tuesday, January 7, we headed to the crash site. This would be a long day, and an emotional one. I awoke around 6:30 am in my little tent, and did not sleep well: the dust is insidious, the wind relentless. My coughing kept me up, and it was the reason I placed my tent far from the others.

Base camp view

I could hear stomping near my tent early in the morning as the arrieros got the horses untied and ready. I dusted myself off, and shook off dust from the sleeping bag, and dressed. It’s not that cold, maybe only dropping to 35° or 40° at night. Breakfast was hot scrambled eggs, muesli, tea and toast, served by the pretty Veronica. We saddled up the horses around 9:45 am. It took four long hours to get to the Valle de las Lágrimas, the Valley of Tears. The weather was perfect: not too hot, sunny, no clouds. Only the strong mountain winds sliced through the valley and kicked up perpetual dust. Our horses carried us over long, winding mountain trails, hemmed in by towering slopes of the Andes. We passed a few green glacial pools; the mountains are denuded, due to the arid conditions. The wind simply erodes anything trying to grow. It was hard to take pictures with the horses rocking, and the wind pounding us.

On a special trip like this, it truly helps to have a guide like Ricardo, who first discovered Eduardo’s jacket in 2005, while climbing in the valley. He returned it to Eduardo, they became fast friends and the rest is history! Their friendship allows us to enjoy the beauty of the Andes, the experience of a survivor, a rough and excitong trip, and learn about geology and glaciers from Uly. (To learn more visit Alpine Expeditions)

Finally, at 3 pm, we could see the Valley of Tears, and the high ridge where the Fairchild first struck the mountain. Beneath it, the steep slope on which the Fairchild tobagganed, and finally impacted to a halt. We could see the little mound in the foreground with the rustic iron cross, signifying the memorial.

The Valley of Tears, where the plane crashed

We dismounted and waited for the remaining riders. I was stunned when Eduardo took my elbow and guided me to the foot of the small ridge where the memorial waited. He wanted me to ascend with him. Only me. This impacted me greatly; it was an incredible honor. And when we reached the top after a few steps. I became so emotional. Me, who never cries. And never in public. I have read this story so often, like the others on this trip. The victims’ names are all familiar: Liliana, Marcelo, Arturo, Rafael, Susy, Diego, Numa, Enrique, Gustavo… and now we were here. Where their bodies lie in the cold, remote cradle of the Andes, I felt emotions well up that I have hardly ever felt. Tears seeped out, and Eduardo and I hugged briefly. He knows what this place does to people. He knows why they come. This is where his life totally changed. And his story—their story—has changed our lives. Surrounded by the towering, stark mountains we love and with hard rocks at our feet, our hearts felt at once heavy with regret and sadness, and yet alive with hope. These victims will never be forgotten. And people like me pay for the privilege to travel an arduous journey to be a small part of this.

Descending into the valley

Eduardo knows all this. He told me earlier that one year he stayed behind while the group went off to explore, and one of the horse handlers began talking to him. The handler confided that his son had committed suicide a few years before. And for a while, he considered it himself, too. But it was the “Alive” story, and the visit to the crash site and memorial that changed his heart. These Uruguayan boys were not given a choice; many died. The ones who lived fought with superhuman strength mentally, emotionally and physically to stay alive. One almost feels like honoring them by staying alive too, no matter how badly you feel. I told Eduardo, All that you endured then has meant something these 48 years. How many lives have you impacted and perhaps saved, simply by trying to stay alive?

Eduardo walked to the small pile of debris, where pieces of the Fairchild were gathered: parts of the ceiling, the walls, scrap metal, signs, gears. I’m sure some hikers take pieces home as trophies, but this is discouraged. At the rusty iron cross, there is a mound where people place meaningful items, despite a sign asking people not to in Spanish. I forgot this rule, and took out a beautiful string of prayer beads with a silver cross, made by my friend Cazandra MacDonald, to lay on the memorial. We placed it near a painted rock signed by the children of Liliana Methol, who died in the avalanche on the 16th day. Then we move it to where the bodies are buried: Eduardo accompanied me, and we had Ricardo take our photo, for my friend Caz. Eduardo put his arm around me and said, “I’m so happy you’re here.”

Laying prayer beads and cross at grave site, with Eduardo Strauch

I felt I must apologize to Eduardo for being so emotional: I didn’t know these people personally, and this certainly is not my story; it’s his. But all of us cannot help but relate, for whatever reason. I think of their immense suffering, their sacrifices, the lost potential of these precious young people. This story is one of life: it is of trauma, tragedy, survival, suffering in the extreme, endurance, human spirit, courage, strength, love, community, fear, hunger, thirst, faith, loss, hope and rescue. Everything in life is in this story. Perhaps it’s why so many people can relate to it. There is so much to this story.

Plane wreckage: Photo by Ricardo Peña

Beyond the ridge where the memorial and grave lie, up ahead, is the actual crash site. We can clearly see it, but it is another hike to go there. I see the front wheels of the Fairchild in the valley below to the right. To my left, at the base of the ridge up ahead, I see the tail stabilizer, sitting there for 48 years. The wind kicks up and the others decide to go down into the valley; they will stay the night. I’ll return to base camp with Eduardo, and three other members of our team.

Our team at the Memorial site and mass grave

While Eduardo sat to eat a sandwich, I ventured over to the tail stabilizer, where two tall hikers were. I asked them to take a picture of me with the tail, and they happily complied. Their English is perfect; they are two 32-year-olds, Gonzalo and Eduardo, on a multi-day hike. They were not even that familiar with the Alive story. When I mentioned that Eduardo Strauch was with me (a fact they probably knew, as many people come when Ricardo and Eduardo come here, just to catch a glimpse of Eduardo), I invited them to come meet him. They were almost taken aback, like it was too great an honor. And they know that our team has paid for this privilege. But after reading Eduardo’s book, Out of the Silence, which is about the most important lesson learned–love– I told them I knew he would welcome meeting them. We walked over to Eduardo, and as I thought, he was warm and kind to them. And they were completely respectful.

I asked if they are hungry, and they startled almost, then politely said no. But I knew they were hungry. I gave them some cookies from our stash, and they were in heaven. They had been subsisting on trail mix for three days and the sugar in the cookies made them so happy! Gonzolo jokingly said, “I love you!”, in between bites.

We decided we need to return, as the weather was getting more threatening. It was another three and a half hours back, on horses. And it was now 3:45 pm. As we jostled down on our horses, the wind kicked up again and my cowboy hat flew off and away, down into the deep, deep valley, where it will never be seen again.

We passed one mountain that was brilliant in colors: like huge slabs of gelato on display, first milk chocolate, then mint chocolate, then coconut, then butterscotch, then double chocolate. At 6 pm we saw an arriero riding fast across the trail, coming towards us, a large package draped across his horse. We were shocked to know that our team didn’t have a the tent for those staying overnight! And what a night it turned out to be. For us at base camp, 40-50 mph winds, pounding our tents, making it impossible to sleep, and endless sprays of fine dust. For those at the crash site, hurricane force winds and bitter cold, so much like those nights 48 years ago, when a group of Uruguayan teenage boys, wearing only street clothes, with no food or survival gear, somehow survived a horrific crash, watched their friends die yet found the will, courage and leadership to survive 72 days in the Valley of Tears.

Laurie at the tail stabilizer
Dinner time!

Next week: Leadership lessons from the Andes.

To participate, visit: Alpine Expeditions

To learn more about the survivors experience, read Alive, by Pier Paul Reads, Miracle of the Andes by Nando Parrado, I Had to Survive, by Roberto Canessa, and of course, Out of the Silence, by Eduardo Strauch, all available in Amazon and in English

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