Duchenne muscular dystrophy is a rare muscle-wasting disease that is 100% fatal. Because the disease is so rare, funding to find a cure is practically non-existent.
“If I can get through a race that I’m told I’m not supposed to, or I shouldn’t even be at the starting line, it helps give me a mental advantage to take on a disease that has never been cured before.”
Jim wears his heart on his sleeve, and his son on his shoulders.
After suffering a heart attack during Jim’s second attempt at completing the 170 mile (273 km) ultra race at the Grand to Grand Ultra in September 2017, Jim was determined to complete the race on his third attempt. The following year, Jim headed back to G2G where he finally accomplished his three year goal. After seven brutal stages Jim crossed the finish line with his son, Jamesy, on his shoulders.
In 2013, Jamesy, was diagnosed with Duchenne muscular dystrophy. When the Raffone family learned of Jamsey’s terminal diagnosis, the doctors told them that nothing more could be done to help them.
That was either the right thing or the wrong thing to say to the Raffone family. Instead of listening to what the doctors told them, the Raffone family has been doing everything in their power to raise awareness about this deadly disease, and ultimately help to find a cure.
Alps 2 Ocean Ultra, New Zealand.
The ultra community is a niche community. It’s also an international community. Michael Sandri, the founder of the Alps 2 Ocean Ultra in New Zealand had met Jim while participating in the Grand to Grand Ultra in 2016. Sandri was constantly being asked by other participants, “Why isn’t there an ultra in New Zealand”. He couldn’t think of a good reason why New Zealand doesn’t host an ultra race. With the help of family and friends, he created that race.
Sandri invited Jim to participate in the race’s second annual run. This was an opportunity to spread the word about Duchenne around the other side of the planet. An opportunity that was far too great for Jim to refuse. Even if it meant not having sufficient time to train for the epic 200 mile (323 km) race.
The Alps 2 Ocean Ultra begins at the base of Mount Cook. The course skirts along alpine lakes and ascends up countless mountain ridges and foothills. Eventually descending into the low lying valleys, the course finishes along the shores of the Pacific Ocean.
“Every person who talks to me or asks me about ultra running, I always tell them about JAR of Hope and Duchenne muscular dystrophy.”
Fellow JAR of Hope teammate Bill McCarthy, another Grand to Grand participant, fundraised in support of JAR of Hope. Supporting them in their mission to find a cure for Duchenne. McCarthy had heard about Duchenne for the first time when he saw Jim running at the Grand to Grand Ultra in 2017. Bill was shocked to learn about Duchenne and he thinks about the Raffone family every single day. “What makes Duchenne so unique, is the lack of support and funding from governments and pharmaceutical companies because it’s such a rare disease.”
Despite the support, Jim encourages his teammates to “run their own race”. Fundraising and supporting JAR of Hope before the race is welcomed. Once the gun goes off, that’s all for them.
27 Hours of Suffering.
“why would someone spend almost 30 hours out there on a course? Then I’m able to tell them about my son’s story”
The elite runners at the front of the pack would complete the long stage in just over 10 hours, after 54 miles (88 km) and a ton of climbing, Jim estimated it would take him nearly 30 hours to run the same route. This isn’t about competing for Jim. It’s about a platform. It’s an opportunity to continue raising awareness about Duchenne. “It’s not about being a ‘competitor’. At that point, it’s all about the admiration for this fellow human being and what they’re willing to put themselves through. Then they want to know why, why would someone spend almost 30 hours out there on a course? Then I’m able to tell them about my son’s story.”
After running through the night and making one last epic push over a nearby mountain, darkness eventually turned into dawn. Michael Sandri stayed awake through the entire night to ensure he could greet every last participant coming in from the long stage. Sandri greeted Jim with a hug as Jim finally came into camp from his 27 hour day.
Sandri relayed a message from Jim’s family, “One checkpoint at a time captain”.
There would still be many checkpoints to go after the long stage. However, surviving the long stage was a huge victory. The hardest part was over, theoretically.
It’s Not Over Until It’s Over.
The next day was even tougher. There was almost just as much climbing but in a much shorter distance. The climbs were steep and brutal. The time cut-offs were also considerably more strict, so the runners had to be quick.
This race would be tough for Jim, all the way until the end. The end did finally come through. 7 days, 200 miles later, Jim had finally run over the finish line in the small coastal town of Oamaru. The crowd of spectators, participants’ families, and locals, all cheered on Jim as he crossed the finish line. Jim running with his JAR of Hope flag in the air.
It took everything he had to cross that finish line. Yet, he somehow mustered up the energy to steal the crowd’s attention for just a little longer. Standing underneath the finish line banner, Jim had shared his son’s story.
Alps 2 Ocean Ultra staff celebrate with Jim after he crossed the finish line in Oamaru. Photo by: Ryan Richardson
Alps 2 Ocean Ultra staff celebrate with Jim after he crossed the finish line in Oamaru. Photo by: Ryan Richardson
Photo by: Ryan Richardson
The story isn’t over yet. Jim is on a mission to grow his JAR of Hope team, to bring them back to the races he has already run. Jim hopes to take JAR of Hope and his son’s story to Ultra races on all 7 continents.
In this installment, Tony discusses society’s disconnect from our ancestral hunter-gather lifestyle, the need to completely reinvent the education system, and how to preserve children’s innate abilities.
TOJ: When I see the word “rewilding,” I picture the opening scene of the movie Last of the Mohicans where Daniel Day-Lewis is sprinting and leaping through the woods on an elk hunt. Is that how humans are supposed to be, an athletic animal in tune with nature?
Tony Riddle: In modern society, we’re basically living in these linear boxes, breathing in the same air, getting the same microbiome experience, sleeping in the same room over and over, and nothing alters. Whereas the tribal cultures that we came from are moving through a landscape that’s forever changing. They’re always uploading new sensory pathways, new sensory experiences, constantly in a state of wiring and rewiring the brain. For me, the path of rewilding is getting back to that – being present in nature and honoring a cellular system, a sensory system and a microbiome system in their natural setting.
When you start to really assess it, some people have this vision of hunter-gatherers as savages, but these are sophisticated beings, and as they move through the landscape, they become the landscape.
Tribespeople operate in these states of meditation which, when you have kids you appreciate it. I’ve studied childhood behavior in the formative years, those first years up until the age of seven. The brain is working at a certain hertz that you and I can only achieve through meditation. This is the state of Flow. It hasn’t been cultured or schooled out of them.
When I think of “rewilding” now I have a term I’m calling “rechilding.” We’ve got to try and get back to that level of frequency that tribes have managed to stretch into adulthood. I’ve tried to break down the behaviors of these tribes. I discovered Peter Gray’s work, who asked the question to 10 leading anthropologists, “What does childhood look like in nature?” From infancy through the age of 16, children play. That’s all they do, without any adult intervention, and they learn everything they need to learn about their adult environment in those first playful years. So if that’s the case, then they go into adulthood still playing and they don’t have to work to find flow states through that field of senses and the frequency that they’ve been operating in.
TOJ: In familiarizing myself with your work, I noticed that some elements are about reverse engineering the range of motion, movement chains and posture of our own selves as children, while others focus on reconnecting with a hunter-gatherer lifestyle, how do you reconcile those concepts?
“For children, it’s about preserving their wildness and their innate abilities.”
Tony Riddle: For children, it’s about preserving their wildness and their innate abilities, the stuff that you and I would have had but we went through an educational process where it’s not appropriate to move or say anything out of turn, where children are expected to just sit still in a classroom for hours on end and not share anything. But then you realize that when you go out into the world that you have to share everything, We need to show them the appropriate behaviors and not dumb them down by limiting their experience.
In those early years, we have things like physical education, but before physical education, we have play. We were all playing around, trying to understand the physicality of our body. We’re born with all the gear, we just have no idea how to use it, because our adult species doesn’t know how to demonstrate the appropriate behavior. When we go through the playful state to try to understand this system as children, we might impersonate all the animals, but now as adults, we have to go to animal flow class to relearn it.
When children go to physical education class, they’re given specialist clothing, which includes sneakers and the specialist clothes that their adult species wear. The adults model to children how tough exercise is and how brutal it is. Adults come back profusely sweating, which is absurd because imagine the hostile environments that this species has had to traverse! My DNA goes back 270,000 years to a tribe in East Africa. So imagine how hostile these environments would have been!
“Imagine the hostile environments that this species has had to traverse!”
We observe these parkour kids, they’re showing us what’s innately in us. I love hanging out with them because it’s just expanded my mind and my movement. The physicality of the human being is unbelievable, but it’s been cultured into a sedentary position at this stage because the adult population is showing a compromised, sedentary lifestyle. By the time a child reaches the age of seven, all of the observations are made – the templates for the rest of their lives. So if the adult species is compromised, then within those first six years, that’s all the child will recognize as their potential range of behavior. I call it their “Tribe of Influence.” The tribe of influence is made up of your family, your friends and your close community around you. If you’re observing all their behaviors, that just becomes your social core. It doesn’t mean it’s biologically normal, it’s just the social norm. And social norms of today are so far afield, we are doing the most horrendous things. I read a stat yesterday, since 1970, 60% of the wild animal populations are gone. We’ve managed to do that in 50 years. That’s less than one human life span. Our social norms are compromising the planet.
There’s a great term I’m plugging the moment which Peter Kahn called “environmental generational amnesia.” Every generation that’s born, it can either expand on the knowledge passed down from before, or be dumbed down further, and it only remembers where it left off. So for those 60 percent of the species that are gone, to the new generation that comes in, that’s their new norm.
“It doesn’t mean it’s biologically normal, it’s just the social norm.”
The natural human pathways from our previous generations have been forgotten in a way, but movement is just a component of it for me. It goes beyond movement. There’s a whole physical, social and spiritual animal that needs rewilding. There’s also sleep and play and nutrition and human contact, even sunlight. We’re just disconnected.
We have a D3 issue with our culture now. We’re surrounded by artificial light in artificial environments, but when we do go out in the actual environment, we cover up by wearing sunglasses, so we’re not actually absorbing any of the nutrients from the sun that we should be. Especially in the UK, people are starved of sunlight, but as soon as the sun is out, they’re wearing sunglasses. If you look at helio-therapy, the highest absorption of D3 is around the eyes. There was a study recognizing that sun exposure helped kids with TB recover, but it also found that when they put sunglasses on, they didn’t get the results.
TOJ: If you were the superintendent of a school, what changes would you make if you are in charge?
“The educational system has to be scrunched up, thrown in a bin and restarted again.”
Tony Riddle: It’s almost like the educational system has to be scrunched up, thrown in a bin and restarted again. It’s flawed and it’s not working. In countries that are trying to do something about it, in particular, Finland in Scandinavia, it’s completely different. People are starting to wake up to the fact that it’s not biologically normal to be indoors all day, it’s not biologically normal to sit down all day, it’s not biologically normal to eat processed foods. But, that’s the environment where we’re growing these young bodies and minds.
The future is unraveling at such a rapid rate with tech. My understanding is, the current iteration of the educational system will have to die because of the way that the tech world is transforming things. So what can we possibly take from the educational model of today for five years time or 10 years time, where are we actually going to be in terms of the evolution of tech?
There’s almost like a natural pendulum. It’s swinging way back over this way. Now we’ll start to explore more biologically normal ways. With my barefoot run, I’m trying to raise awareness of these issues like sustainability in the environment and I can reach a wide audience through technology.
“It comes down to small changes.”
It comes down to small changes. You can drive yourself nuts thinking, “I’ve got to do this and do this…”, but actually, there’s value in just assessing things that are in your hands, looking at what is a biological norm versus a biological extreme. If you can’t justify something, you have to let it go. Then, what you can start to do is whittle away at things that aren’t appropriate behaviors and that will improve in the next generation that is observing those behaviors.
You and I are walking around with the observations from those first six years of our lives, and then if you really unravel it, we’re walking around with the norms of our ancestors as well.
We need a different educational model. We need a schooling system based on educating kids about their fundamental needs, including movement and play, one that gets them involved in growing natural foods and learning about their own independent role within the interdependent social tribe.
We’re all unique, but we go to school and we’re taught to conform. You have to sit and do the same exams, but in a real tribal situation, there’s an interdependence of the tribe, When you have kids, you suddenly realize how important it is. I’ve got three kids and another one on the way. They’re all different. Nature didn’t design them to be the same. They’re designed to be uniquely different so they fulfill their role in our tribe. Why not nurture the fact that they are different in order to grow their individual talents at a very young age. How do I nurture their unique abilities and create the appropriate environment for them to learn and become uniquely awesome?
Stay tuned for our REWILD series featuring an in-depth discussion of Tony Riddle’s socially extreme, yet biologically normal practices.
Part 1, Tony Riddle: Introducing REWILD
Part 2, REWILD with Tony Riddle: Children and Education
Part 3, REWILD with Tony Riddle: Transforming Your Body
Part 4, REWILD with Tony Riddle: Barefoot Running Across Great Britain
Feature Image: Tony’s daughter working on her grip strength in Tony’s studio.
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