About Hope in Motion

Metamorphosis

Laetitia, AS, and Hope in Motion

As Victor Hugo once wrote, “there is nothing like a dream to create the future.”  

Well, that’s exactly why we created Hope in Motion!

 

This is the story of Laetitia’s metamorphosis, a person who believes in her dreams and would not let the illness take them away. When she first started experiencing constant back pain, people would tell her that it was no wonder, having cycled more than 40,000km around the world.  Years later, she was diagnosed with Ankylosing Spondylitis and by that time, she could barely walk.

 

The project began to developed naturally as Laetitia found out what it meant to live with AS, an illness for which there is no cure, an illness that turns one’s body against itself, forcing her to reevaluate the very way that she lives her life.  

There is nothing like a dream to create the future

Finding the bright side of any situation, Laetitia found there was also hope in finally being diagnosed.  She began to learn about the illness and connected with others who live with SpA; little by little she started to learn ways to manage her symptoms. 

Unfortunately, by the time she was diagnosed, she’d been immobilized for months due to

 a herniated disk that mislead the search for the cause of her chronic pain and inflammation; this only helped to exacerbate the symptoms of Spondyloarthritis.

 

Luckily for Laetitia, one of the ways people manage the chronic pain and stiffness is to keep moving:  walk, cycle, swim, or run: keeping active can help to stave off reduced mobility and spinal fusion!  This reaffirmed to her that all those years of being ultra active had allowed her to self-manage the symptoms.  As if by intuition, she had just kept moving.  The long road back is just the beginning of another journey.

 

Hope in Motion aims to cultivate advocates who act alongside the worldwide community of people affected by Ankylosing Spondylitis to raise awareness, promote unity, early diagnosis, and self-care; we encourage people to prepare for and respond to the ever changing battle with SpA.

The Project in Action

Become an Advocate

Help make an impact

Use your own unique skillset to help affect positive change. There are many ways to get involved on local national or international levels: being informed, raising awareness, helping improve care for Spondyloarthritis (SpA) patients, aiding research, and improving legislation and regulatory issues. IN ACTION: join us in becoming advocates: in the Participation section, we propose a few ways to begin, and in the Resource section there are ways to get informed. Find a place for yourself; let's stand together.

Motion as a Therapy

Take action to manage the symptoms of Spondyloarthritis

Stay active mentally, physically, and emotionally; these are key factors in a longterm treatment strategy for AS and other forms of SpA. IN ACTION: constantly working toward her vision of a desired state of being, Laetitia has accomplished small goals, such as getting out of bed, that have evolved into accomplishments like walking 10,000 steps and onto running 5 km.

Make the Invisible Visible

Start the Conversation

Help change social perceptions about invisible illness by engaging people, opening minds and hearts. IN ACTION: we use the bone suit start the conversation about invisible illness.

Unite People Around the World

illness knows no borders, Let's build bridges

Create connections around the globe to strengthen the community of people affected by AS; we live in an era of interconnectivity like never before. Let’s grow compassion, acceptance, and trust across politics, cultures, and economies. IN ACTION: we aim to bring people together by meeting with patients, working with associations and sharing Stories of Hope.

Promote Early Diagnosis & Treatment

Let's Start by Asking the Right Questions

When it comes to spondyloarthritis the average diagnosis takes more than five years. During this critical period symptoms can become severely worse, often due to misdiagnosis. Simply asking the right questions could be the start of the diagnosis process. IN ACTION: we promote a simple quiz about back pain that can empower people to start asking the right questions to their doctors. We encourage everyone who suffers from back pain to take the quiz.

Raise Awareness for Spondyloarthritis

Be a voice

There are more cases of Spondyloarthritis than there are of Cystic Fibrosis, Multiple Sclerosis, and Lou Gehrigs Disease combined, yet most people have never heard of it. Raising awareness of SpA is an important step toward improving the lives of those who have it and toward finding a cure. IN ACTION: We use social media, adventure travel, and manifestations, using open hearts and minds in the aim of making these illnesses better known.

The Team

Laetitia

From a very young age Laetitia was tremendously active, she would often come home with scrapped knees (still happens 😉 ).  She could barely sit on a chair or be anchored in one place for too long!  But she can spend hours looking at a map dreaming up new routes; she loves to get out there and explore!  Sport and adventure have always been a part of her daily routine.  Nature is where she tunes herself.  Addicted to physical effort, outdoors and intrigued by the environment she lives in, she likes provoking insolite situations.  Fervently committed to striving for a better world, Laetitia is a visionary who leads with compassion, tolerance, and respect for all things.  And she literally would not hurt a fly.  She simply loves working with and meeting people.  She is naturally benevolent and always has a thought for others.  Impulsive with a strong drive for adventure she easily embarks for all kind of discovery.  She is the stamina of the team, always finding the good in anything to keep on going!

Born and raised in Switzerland

35 years old

Finds 4 leaf clovers almost every day

Highest pass by bicycle: 4,655m

James

Coming from the Prairies he grew up with big skies and wide open spaces developing his love for nature and exploration.  James loves to be outside in the rain and has worked outside many a Canadian winter.  Obviously, he adapts easily to new surroundings.  Always curious for what’s going in the world of technology and world affairs, he can easily immerse himself learning about it.  A futurist and technologist, he believes in the capability of technology to save us from ourselves.  He tries to make the most of the way that technology has changed how we interact with the world.  A reader of stories, histories, science fiction and he aspires to be a story teller himself.  He is the pragmatic mind; he is handy and mechanically inclined, liking to make things work so he is also the mechanic of the team.  He’s loved food and cooking ever since he learned that it was more than Kraft dinner, roast beef, chips, carrots, and potatoes!

Born and raised in Canada

34 years old

Always up-to-date on the latest technology

Coldest day spent working outside: -61C

Friends of Hope in Motion

Where would we be without our friends?  Hope in Motion is proud to call these people friends.  Some have lent their time, others their hearts, and others still their homes.  We’ve have exchanged ideas and found inspiration in one another.  From our hearts, we thank you.