The brother movie: Stuck between a rich inner life and daily struggles with Duchenne

The brother movie is the story of the Karouani family in France and their daily life with Kaïs, their son, who has Duchenne muscular dystrophy (DMD). Duchenne is a degenerative muscle disease. In France, it’s called Duchenne myopathy. There is no cure and no hope of recovery. The life expectancy of people with DMD is 20 to 30 years. Every day, every week marks the loss of muscle strength and autonomy for youth with DMD.

The brother movie follows Kaïs, a young adult in his 20s, at a time when DMD is hitting hard. On awakening, every morning, he needs the help of his parents and brothers, Fehd, the bodybuilder, and Zaïd, the ninja, to cope with DMD.

Between dreams and living the disease

This short film reveals two parallel universes: the imaginary world in which Kaïs takes refuge with the animated heroes of manga; and, his difficult mornings in a body weakened by disease. The film presents five mornings in his life, as seen from the perspective of different family members, who take turns getting him out of bed in the morning. It is difficult for his family to accept the prospect of Kaïs’ death at such a young age, but it’s just as difficult for them to watch his suffering.

The brother movie presents a unique perspective of DMD. Film sequences switch from the reality of living with DMD to Kaïs passion – his animated dreamworld of manga. This short film alternates between animation and real-life shooting to connect viewers to Kaïs’ inner life and the real life that people with DMD and their families must endure.

A film to raise awareness about DMD

Strong in emotion, this short film puts a human face on this terrible disease. This awareness is essential to the development of new treatments for DMD. The wide distribution of this film will sensitize the public to this disease.

The production team

Mireille Roy, President and Founder of Tecima Productions, produced this article > Facebook Tecima Productions –  Tecima.com

And if art became a cure?

Victor was diagnosed with Duchenne

DMD is an incurable and 100% fatal disease. Duchenne muscular dystrophy is a rare genetic disorder that affects mainly boys. The progression of DMD is unforgiving: the body’s muscles gradually weaken, leaving the boys in a wheelchair at the age of 12, with a life expectancy of 20 to 30 years. Today there is hope for DMD, and several new treatments are on the horizon.

Raising Funds and Awareness to Access New Treatments

Within the next 5 to 10 years (or even before then), some new treatment options should be on their way to completion. At this time, two treatments are approved in the US and Europe, but not yet available in Canada. Therefore, educating people about what Duchenne is and about access to new treatments is extremely important. It will help children like Victor access the new treatments rapidly before the disease has evolved to much.

An excellent way to get everybody to care about Duchenne is by sharing your “words of wisdom.”

 


And if art became a cure?

This text was written by Jean-Philippe Morand, which was initially published in the group “Clan Morand” adapted for the La Force blog.

 

 

JP: “Shortly after it was announced in 2011, that my son Victor, then 5, had a degenerative—and especially—incurable disease, I decided to fight against Duchenne muscular dystrophy (DMD)). This disease that afflicts Victor and thousands of others was not going to take over my family’s life.”

 

Jean-Philippe, a sportsman by nature, set up Dystrospin. This fundraising activity, having seen six previous editions, consisted of 10 hours of “spinning” with 500 participants. Jean-Philippe also ran marathons and drove hundreds of kilometers with Victor, his son, to show him that anything is possible. This allowed them to collect over $ 100k for the DMD cause and research.

 

The “Clan Morand”

Victor is now 13 years old, and his brother Vincent is 11 years old. The two brothers wanted to get involved in the cause of research for Duchenne muscular dystrophy, each in their way. The Morand Clan was born. Vincent will participate in sporting events with Jean-Philippe and Victor will contribute to the cause with art.

Victor is an artist in the making, and he already produces beautiful paintings. Many people around him have already placed orders; Vic’Art’s paintings are exhibited at home and friends’ houses. He’s passionate about it! He wants to make a career out of it and maybe make a living from his art one day.

 

 

And if his art could allow him to find a cure for his own illness? Clan Morand is Victor’s art and sport serving the DMD cause.

Feel free to contact Victor via the Facebook page (here) and place your order at Vic’Art! For each canvas sold, the buyer is invited to donate the same amount to the La Force Foundation.

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research requires funding.

For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Sharing our stories is a step towards healing

We invite you to share this story in your community

Donate to our organization here so we can help the DMD community to be heard.

 

Other interesting articles

 

We thank the Morand family for their involvement in the DMD community, and for allowing us to publish their story.

Raising my son with Duchenne

Living with Duchenne muscular dystrophy is difficult. I understand it because I live this reality every day. Duchenne muscular dystrophy forces you to live the moment and enjoy it even more.

Christine Winslow from Johannesburg South Africa shared her story on the Facebook page of her son, Jason, who lives with DMD. She wants this to help one or more families and to reassure those who live the same thing. The Force supports this excellent initiative. With the approval of Christine Winslow, La Force shares her story with you today.

We invite you to share your story with us here.

 

“My GP scribbled the word “Duchenne” on a Post-it and told me to go home and read about it. That was the day our lives changed forever.”-Christine Winslow

 


Raising my son with Duchenne

Christine had a problematic pregnancy. Jason arrived two weeks earlier. At 7:28 pm, Jason Parker Winslow was born at Victoria Hospital in Seychelles. She would never have known that her baby would be born with a fatal muscle disease like DMD. As Jason grew up, he had no muscle tone, and his parents had to put pillows behind him when he played with his toys. Jason’s parents had noticed that when he interacted with children of his age, he didn’t babble like them. He wasn’t trying to crawl and was rather happy to play alone.

“I remember thinking, is it my fault? Perhaps I wasn’t doing the right thing or teaching and helping my child correctly.”-Christine Winslow

 

Something was wrong

At about two years old, Jason still wasn’t walking. “I decided one morning to stand him up and hold his hands tight to play a game. He fell many times, and after many tries, he finally got the hang of it. He was taking a few steps, and it was a breakthrough in our house. Finally, we were making progress.” -Christine Winslow

People would compliment his huge calves. Christine recalls that a lady had said, “Look at those beautiful big calves.” At that moment she did not know that it was one of the traits of Duchenne muscular dystrophy. Christine always felt that her entourage was wondering what was happening.

 

“You end up isolating yourself with your child because it’s too exhausting and hurtful to have to explain it all. The worst was when parents would interfere and say, “relax or stop panicking let him go off”: as a mom you know something’s wrong and you need to be cautious.”-Christine Winslow

 

It’s tough to see your child undergo as many tests and evaluations. Parents spend a lot of time at the various intervention centers with their children. Occupational therapy, speech therapy, physiotherapy, the list is long. Jason had several symptoms of Duchenne muscular dystrophy. If only he had been diagnosed quickly, they could have started the treatments sooner. “Instead, we were forcing him to climb stairs.”-Christine Winslow

 

The Doctor scribbled the word “Duchenne” on a Post-it

July 2013, Jason was six years old.

“He had the flu, and off to the Doctor we went, not expecting the visit to end as it did. The Doctor prescribed medication, and we were walking out when he called us back. The Doctor noticed Jason’s waddle and requested Jason to squat. I explained that he couldn’t. He scribbled the word “Duchenne” on a Post-it and told me to go home and read about it. Recommended we go to South Africa for testing.”-Christine Winslow

She called her husband at work and told him the news. He immediately started to google. Later that day, he arrived home and told his wife what he had read.

 

“It felt like darkest coldest day ever. It felt like everything around me was crumbling. Shock fear and confusion, I don’t even think I remember what he said after.How on earth could that be? A fatal muscle wasting disease? Jason had the biggest calves so how could it be.”-Christine Winslow

 

This family did not know much about DMD. After their visit to South Africa, she sat on the plane thinking that the result would be negative. It could not be positive. It could not be the DMD. “Our perfect little family couldn’t possibly go through something as devastating as this.”-Christine Winslow

After months of waiting for genetic test results, sleepless nights, the result has arrived. It was positive. Jason had Duchenne muscular dystrophy. This family learned that their only child had DMD. The illness entered their home and told them that Jason would stop walking at age 12 and would have a life expectancy in his twenties.

 

Duchenne changes a person

 

“Duchenne changes a person. It changes your relationships with friends and family.There are friends and family that will support you on your journey, and there are others that will drift away. Do they not know how to act when they see Jason in his chair? You don’t receive an invitation because it’s too much for them to handle?”-Christine Winslow

 

Christine smiles and tries to stay positive. She remains strong for her family. But she is also a mother who raises a son with DMD as best she can. This mother gives us her feelings in all honesty. “I will say that it is not always the easiest thing to watch another child score a goal or climb a jungle gym. The bitterness and anger creep in”-Christine Winslow.  Why is his son confined to a wheelchair? The feeling of injustice is big. At the same time, there is another voice that says she had to make this trip.

 

“I’m still not completely sure why but I do know that it’s made me a better person. Not to take things for granted.”-Christine Winslow

 

Jason has not been walking since March 2017. Endless appointments with doctors and specialists are always very demanding and emotional. Not to mention the many sessions in therapy.

Christine continues to educate the public about DMD. She continues to hope that there will be a treatment one day.

 

“I will travel with my son, go on adventures, make memories and make each day count.”-Christine Winslow

Special thanks to the Winslow family

 


 

A call to resilience

A text written by Guylaine Rivard
This is a text that has been originally published in the group Les mamans Duchenne.

On June 18th in 2009, it’s been almost ten years ago today that the DMD diagnosis for Félix fell on us. I say dropped on us, but it was more or so as if I got shot in my chest. Duchenne muscular dystrophy…pow! Incurable…pow! Loss of walking ability, decreasing life expectancy, wheelchair…Pow! Pow! Pow!

 

I am rolling with the punches. Each word, I feel like I’m taking a step back with my chair. I can’t; I really can’t believe that such a thing is happening to us…

This incurable disease will slowly take my little boy away without letting me do anything to stop it. I went shopping with Félix right away after the diagnosis because that’s what we planned to do: going for dinner at a restaurant and buying him sneakers.

I can remember sitting at a table, Félix couldn’t stop talking (as usual). I look at him, and I smile. He’s six years old. I just want to scream and cry.

 

First clinic appointment

There comes his first neuromuscular clinic. I’m waiting for our turn in the corridor. I feel devastated. I see a family with a youngster who was probably 17-18 years old or so. The parents are talking to everybody:

” Hi, Daniel! How are you?”  The mother speaks with interveners. Between two words, she gives pieces of a cookie to her son, because he can’t raise his arms to his mouth. She keeps going as she still speaks, she puts the juice with a drinking straw close to his mouth. Let me say I absolutely do not understand how they’re doing to be happy talking here, and even laughing! I find them impressive, and his mom fascinates me, I don’t know how she does it.

 

Learning how to live with the disease

Today, I know. I know that you do learn to live with the disease. It becomes a part of our life. One day, I wake up, and resilience shows up. I got to prepare myself to deal with the disease because the diagnosis is a shock that we must go through, but other shocks will follow. I must decide to fight, to roll up my sleeves and move ahead to make sure Félix lack nothing and help him the best I can so he can also go through shocks and help him grieve.

 

Resilience and resistance

Resilience, resistance, I am not quite sure… But one thing is sure, we are fighting, always. (Félix’s dad is a great history fan. He made me realize that June 18th is a date that we will never forget.)

June 18th, 1940: De Gaulle’s appeal for resistance General de Gaulle calls every Frenchmen and Frenchwomen to stand up and fight against the enemy:

“But has the last word been said? Must hope to disappear? Is defeat final? No! Whatever happens, the flame of the French resistance must not be extinguished and will not be extinguished.”

I invite you, mothers, fathers and Duchenne youngsters to not give up:

“Whatever happens, the flame of the Duchenne families’ resistance must not be extinguished and will not be extinguished.”

 

Interesting links

This text has been published on a private group called “Les Mamans Duchenne” that is administered by Carole Auclair.

https://www.facebook.com/groups/487532107953556/

 

Girls with Duchenne: The Great Forgotten

Only one woman in 50 million is affected by Duchenne muscular dystrophy (DMD). Considered as a male disease, DMD usually affects boys (1 in 3500). Some people don’t know that they exist. Those women affected by DMD are there, and they are suffering from this lack of education. Know that DMD is a rare disease and difficult to live for a boy. So, just imagine what it could mean for girls. They face many additional obstacles; they aren’t unicorns they exist, and DMD girls deserve to be heard. Here’s what Feriel had to say and without censorship.

 

Feriel’s seeks equality

Feriel Cheba: “As a woman with this myopathy, I am fighting to say that us, girls with Duchenne’s myopathy, we exist. We are here, we too, we do want to live and have the right to dream about recovery and a better life. »

 

A world traveller despite DMD

Feriel is a young woman of 26 years old, native of France. Tiredness related to DMD didn’t stop her to become a world traveller. She visits many countries going through Europe, Tunisia, Mauritania, Cuba and Senegal to only name them. She is also a cinephile and loves everything that involves culture. Simply put, she loves life. She fights to live life to the fullest every single moment.

 

A sense of abandonment

It is in 1998 that she received the diagnosis of Duchenne’s myopathy (myopathy is the term used in France). She was only six years old, and it was already challenging to hear this news. However, repeating continually that she has a male disease amplifies her pain.

Feriel Cheba: ” It’s very hard as a parent to learn that your child has this disease especially when doctors tell you constantly that it’s a male disease. Incomprehension and unfairness are high. Why do so many doctors think this disease doesn’t affect women? It is time now to tell talk about it with young medical students, it has to be told during their genetic courses that Duchenne’s myopathy affects mostly boys and sometimes girls too”.

 

Hurtful words

She also gets many hurtful comments. There is a lack of resources and answers. In fact, it is even harder for girls to access clinical trials. Two neurologists told her that some clinical trials were open for boys exclusively, what she thinks is an injustice.

Feriel Cheba: “People do not believe me. They tell me that it’s impossible that I am affected by this disease. People don’t like what is rare. An internist even told me that it was an anomaly. Am I unnormal? No, I don’t think so. I am only different as everyone else”.

 

The hope for recovery and everybody

Despite all the difficulties encountered, she remains hopeful. She takes advantage of every moment spent with her family and friends. She also knows the existence of a treatment that can help with her specific mutation. Although, she can’t access it since its exclusive for walking patients. In her heart, she keeps hoping and dreaming of the day there will be a treatment for everyone suffering from DMD.

 

More about Duchenne: Duchenne muscular dystrophy – La Force DMD

Facebook Group: Girls can get Duchenne Too

MDA > Girls don’t get Duchenne or do they

Myopathie de Duchenne

 

 

Portrait of Duchenne – For the love of his brother!

What’s it like to live with DMD? As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death in your twenties? As a sibling, relative or friend, to face mourning your loss?

The journey is beyond words.

Our Web short documentary series, “Portrait of Duchenne Canada”, will present the experiences of families and children with DMD. You will meet five Canadian families who are taking on the challenges of raising money and leading the way in advocating for access to new treatments. Today, more than ever, it’s time to share their stories. New treatments are on the horizon and families need to be heard to advocate for ways to access them quickly.

SAMUEL & GUILLAUME

Dream of a robotic arm becomes real, too late…

Samuel Fleurant-Beauchemin’s brother Guillaume had DMD. Guillaume was gradually losing the use of his arms. One day, Samuel came to visit his brother with a sparkle in his eyes. He had just seen a JACO robotic arm. He believed that the wheelchair-mounted device would restore Guillaume’s independence. Samuel decided to get his brother the robotic arm at all costs! He would start a non-profit organization to raise funds. He would quickly succeed in his task. And he did. But on the day that the arm was installed, destiny struck. Guillaume was admitted to the hospital, where he passed away shortly afterwards. Despite this ordeal, Samuel decided to continue to give back. Today, he runs an organization called A bridge to autonomy. To date, they have given 20 robotic arms to children with DMD in Quebec.

 

 

 

Quotes from the video

 

Mourning with his brother

Samuel Fleurent-Beauchemin:“To me, what has been the hardest was to live with the bereavements of my brother, who should no longer be able to do such and such.”

 

Samuel Fleurent-Beauchemin: “I was a bit angry with life, to make him suffer and to make us go through all of this.”

 

Samuel Fleurent-Beauchemin:“I think for him, as a human being who has already had his autonomy, I think the biggest challenge is to understand that you once have done it, but no more today.”

 

When the arm was installed, he went to emergency, never to return

Samuel Fleurent-Beauchemin:“On January 24th, Guillaume’s arm was installed. He had just been officially installed and, that day, he went to the emergency.”

 

Samuel Fleurent-Beauchemin: “We have created a foundation to help others. We help people by providing them with technical assistance and tools that are complementary to what the government offers. Currently, it involves the gift of robotic arms.”

 

Paying forward in memory of his brother

Samuel Fleurent-Beauchemin: “What my brother has brought me in life continues to grow on me. It is the project that he inspired in me; it is a project that represents him. It’s always inside me and it’s always growing. When you are in mourning, you really must focus on the person you have become, because of these past ones. Without this person, we would not have become who we are. I am glad because he’s still making me grow.”

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research requires funding.

For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Bruce Babington, our own La Force athlete, will cycle across Canada in July 2018 to raise funds and awareness for DMD. Our part is to tell their story.

 

Sharing these stories is one step forward towards the cure

  • We invite you to share this story with your community.
  • Encourage Bruce’s challenge: to cycle from Quebec to British Columbia in 24 days! Donate / here
  • Make a donation to our organization, so we can continue to help get closer to treatment. Donate / here

 

For more information:

About Samuel’s organization: Un pont vers l’autonomie / here

About Kinova’s JACO robotic arm: Kinova / here

Portrait of Duchenne – Victor’s unforgettable experience!

 

Giving an incredible experience to your child

Victor Morand, 11 years old: “I like it because they give you a lot of encouragement and it’s one of the only activities I can do with my dad.”

It took about two years of going back and forward to doctor appointments before the Morand family got a DMD diagnosis. Like every other parent, Jean-Philippe Morand turned to the Internet looking for answers. He understood…  the best hope for Victor was research. Exactly one year after receiving the diagnosis, they started a fundraiser event called Dystrospin.

They’ve raised thousands of dollars for the past four years, but Jean-Philippe wanted to do more so he started running and cycling with Victor which made them on top for raising funds awareness for DMD. In 2017, the father and son travelled over 600 km; they ran two marathons (Québec and Ottawa) and accomplished a track cycling of 650 km called La randonnée Jimmy Pelletier. This is the inspiring story of Jean-Philippe and Victor.

 

 

Quotes from the video

The hope lies in the research

Jean-Phillipe Morand: “Hope lies in research. A few weeks after I learned about Victor, I thought: well, after going through all the information on the internet about muscular dystrophy, I realized that my only hope lies in research. So, from there, we started exactly a year after the diagnosis the Dystrospin for collecting money to give it to research so we can find a cure to help Victor.”

 

The importance of their actions for funding research

Jérôme Frenette, Professor: “People alike Jean-Philippe who put so much energy in developing recruitment projects, it really matters. Finally, it puts a face on those affected by the disease, we now know why we wake up to work. We have children…I have pictures of many children at my office, I put them in the laboratory. People like the foundation give us a real picture of the tangible reality about everyday work that you tend to lose sight of when you work in a laboratory. Foundations are helpful, they give us credibility when we discuss with granting agencies. I think that for them, we also put a face on the children concerned, on people and on the importance of research in those fields.”

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research needs funding.

For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Bruce Babington, our own La Force athlete, will cycle across Canada in July 2018 to raise funds and awareness for DMD. Our part is to tell their story.

 

Sharing these stories is one step forward towards the cure

  • We invite you to share this story with your community.
  • Encourage Bruce’s challenge: to cycle from Quebec to British Columbia in 24 days! Donate / here
  • Make a donation to our organization, so we can continue to help get closer to treatment. Donate / here

 

For more information:

Jean-Philippe Morand event Distrospin/ here

La Randonnée Jimmy Pelletier/ here

,

Portrait of Duchenne – Every action counts!

A chance encounter launched groundbreaking DMD research

When Max Sedmihradsky was two-years-old, he received the DMD diagnosis. The news was devastating beyond words for his parents Kerry and Andrew. After a moment of profound sadness, Andrew came up with the idea for Max’s Big Ride. Every year he cycles between Ottawa and Hamilton, Ontario, with Max in front of the cargo bike. The ride aims to raise funds and awareness for Duchenne muscular dystrophy.

Andrew works at the University of Toronto, where the researcher Patrick Gunning also works. Andrew took the chance to reach up to him to see if he would do some research for DMD. At that time, Patrick Gunning reached out to his graduate students to start a research on DMD. They found out that the cell they are working on, “Stat 3”, plays a decisive role in DMD. A year later, after this chance encounter, the Gunning Group received a $300,000 grant and are performing ground-breaking research for DMD. This is the story of Max’s Big Ride and the Gunning Group.

 

 

Quotes from video

Magic happened

Andrew Sedmihradsky: “You know, it’s the very random kind of thing that happened and the fact that I work in the building where there is a man who potentially could have the cure for Duchenne is tremendous”

 

Kerry Sedmihradsky: “Patrick Gunning is a researcher at the University of Toronto where Andrew works. And Andrew attended a talk which mention the research that Patrick was doing and for what he has told me, he is kind of the rock star of researchers at the University of Toronto”

 

Patrick Gunning, Associate Professor: “Would you be interested in looking at developing drugs for Duchenne?’’ And I said: “Well, we are typically oncology based and I don’t think that the targets that we make drugs for are involved in Duchenne.” I asked my graduated student Yasir to investigate whether STAT proteins in particular were involved in Duchenne.”

 

A ride of hope: Max’s Big Ride

Andrew Sedmihradsky: “You know, a few days into it, we just went on a family trip to the museum and I remember in the gift shop seeing a card that said: “Falling down is part of life but getting up is living.  It really responded to me, it resonated with me. I think that’s kind of the attitude that we’ve adopted you know, from that point forward. And you know, you have to fight, and we’re determined as a family to do so. To try and beat this.”

 

Kerry Sedmihradsky: “So, he worked out the route between Hamilton and Ottawa which is 600 km with Max riding in the front of the Cargo bike and it’s been a really, really positive experience for our family.”

 

Groundbreaking research with the Gunning Group

Yassir, Graduated student: “It’s very rare that we get to see what we do have an impact. So yeah, my motivation is, just all the young children that have Duchenne and if I can do anything, you know one percent that I can do to try to push this a little bit more, maybe five years later someone pushes it more and hopefully, we live in a world soon where Duchenne is something that is normal and we can cure it.”

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. We need your help. Research is the only hope. And research needs funding.

For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Bruce Babington, our own La Force athlete, will cycle across Canada in July 2018 to raise funds and awareness for DMD. Our part is to tell their story.

 

Sharing these stories is one step forward towards the cure.

  • We invite you to share this story with your community.
  • Encourage Bruce’s challenge: to cycle from Quebec to British Columbia in 24 days! Make a donation /Here
  • Donate to our organization, so we can continue to help get closer to treatment.  /Here

 

For more information:

About Max’s Big Ride:  Max’s Big Ride / Here

About the Gunning group: The Gunning Group  / Here

John Davidson, godfather of the DMD community

 

This is the story of John Davidson going the distance for his son Jesse and ends up raising millions for new research.

 

 Going the distance to raise millions

Sherene Davidson : When we first started, there was barely anything to fund because there just was nothing out there that people were doing.” 

 

In 1986, the Davidson family learned their son Jesse had Duchenne muscular dystrophy (DMD). They had never heard the expression before. The diagnosis literally flipped their world upside down. They knew little about science and research, but they figured quickly it was their only hope. When Jesse got to an age where his mother, Sherene, had to do the lifting because he was losing mobility, John switched from golfing to walking to stay in shape so he could spend more time with his family. His walks were getting longer and longer, so an idea came to him. Maybe he could walk across Ontario with Jesse, shake some hands, raise funds and get people talking about DMD. He did!  The walk across Ontario was so successful that he decided soon after that to walk across Canada solo. The sum of these two challenges leads to the rise an organization called “Jesse’s Journey.” In the course of the past twenty years, John Davidson and Jesse’s Journey have raised over 9 million dollars.

 

 

Quotes from the video

 

The shock of diagnosis

John Davidson : “I think when it comes to the diagnosis, no one is prepared. And your world literally flips upside. First, you cry. And then, you have a period of wonderment. Why us and what did we do wrong? And have a period of guilt. And then, you just go to a very quiet and dark period.” 

 

A 3,339-km trek across Ontario

John Davidson : “I asked Jesse what he thought about that, I took him out for lunch on his birthday. And he looked at me and he said: “Are you nuts?” And I said: ” Well, yes I am Jesse. Just a little bit.” 

 

Sherene Davidson : “I did think it was very magical, the trip that Jesse had. It was something he’d remember all his life. And the disease itself limited him in so many ways and it was just wonderful that he had that experience that was not limited to.”  

 

Walking 8,300 km across Canada

John Davidson : “I never though of quitting with the exception of one day when I had called home and Jesse wasn’t well. And I remember I was in Saskatchewan, I remember stepping out of the road down that morning and it was like -28.” 

 

Jesse’s passing

John Davidson :  “You always think yes, you’ll be prepared, because in some dark recess of your heart you’ve kind have always known that this might be the outcome. You never talked about it really but you thought that maybe we wouldn’t win in the long run. Is Duchenne thing? Absolutely. But in terms of my life, it may well have been the thing that made me.” 

 

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research needs funding. For the past 20 years, Canadian families, like the Davidson, have been raising funds for research and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Sharing these stories is one step forward towards the cure.

  • We invite you to share this story with your community.
  • Encourage Bruce’s challenge: to cycle from Quebec to British Columbia in 24 days! Donate /here
  • Donate to our organization, so we can continue to help get closer to treatment. Donate /here

 

For more information:

About John Davidson’s organization Jesse’s Journey

 

Watch our new web series, “Portrait of Duchenne.”

What’s it like to live with DMD? As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death? As a sibling, relative or friend, to face mourning your loss?

Through our series, the DMD community and people beyond our community will feel this very painful experience. We meet five Canadian families who are taking on the challenges of raising money and leading the way for access to new treatments. Today, more than ever, it’s time to share their stories. New treatments are on the horizon, and families need to be heard to advocate for ways to access them quickly.

 

Visit our new Vlog > vlog.laforcedmd.com

Cycling across Canada to cure DMD

What’s it like to live with DMD?

As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death in your twenties? As a sibling, relative or friend, to face mourning your loss?

The journey is beyond words.

 

Our Web short documentary series, “Portrait of Duchenne Canada,” will present the experiences of families and children with DMD. You will meet five Canadian families who are taking on the challenges of raising money and leading the way in advocating for access to new treatments. Today, more than ever, it’s time to share their stories. New treatments are on the horizon, and families need to be heard to advocate for ways to access them quickly.

 

This is the story about Bruce Babington, who will cycle across Canada in July 2018 to raise funds and awareness for DMD.

 

A radical decision

“I made rather a foolish decision to ride solo across Canada.” 

-Bruce Babington

 

Bruce has made a radical decision to cycle solo across Canada in July 2018. His goal is to help people afflicted with Duchenne muscular dystrophy (DMD). Bruce is an osteopath. About one year ago, he started to treat Anakin Lacasse, a 9-year-old boy with DMD.  It was the first time that Bruce had encountered a patient with this condition. Anakin was rapidly losing muscle strength, and Bruce quickly became aware of his patient’s reality. Then, he learned about Anakin’s mother’s involvement in La Fondation La Force.

Bruce was so moved that he made up his mind, just like that, to do something to help. So, in July 2018, he’s taking one month off work to cycle an average of 200 km/day between Mont-Tremblant, QC, and Vancouver, BC, in 24 days.

 

First impressions

  • “When I first met Anakin, I was very inspired by him.”
  • “It’s very clear that there’s no quick fix in this instance.”
  • “I wanted to cycle across Canada, so why not do that for La Fondation La Force?”

 

The overriding challenge

Jacques Tremblay, medical researcher (translation): “The main challenge in trying to develop therapies for rare diseases is getting funding to do the research. The direct impact of foundations, such as La Force is that, firstly, they help spread awareness of this disease to the general public. They raise funds that are essential to get preliminary results and then be able to go after larger grants from government-dependent organizations. If we apply for grant applications to those organisations without preliminary results, basically, our chances of having a grant are zero.”

Bruce Babington: “The challenges I have in a 24-day period are nothing like the challenges Anakin is going to have every single day of his life. I try to do as much as I can to help promote La Fondation La Force.”

 

How will cycling across Canada help the DMD community?

  • We are running a fundraising campaign: “Bruce Across Canada.” La Fondation La Force will award all “Bruce across Canada” funds to the most promising Canadian research.
  • We want to give a voice to the Canadian DMD community. Bruce’s endurance challenge is about starting a conversation on access to new treatments in Canada. Two new treatments for DMD are approved elsewhere in the world. Many other treatments are in the final phase of clinical trials. Canada has no framework to review new therapies for rare diseases quickly and efficiently, and the reimbursement process for such treatments is incredibly cumbersome. Add your voice to our conversation. Be a change maker.
  • Help us to ensure that a whole generation of children and young adults with DMD can access new treatments. It’s time to rise to the challenge!

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research needs funding.

For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Our part is to tell their story. Sharing these stories is one step forward towards the cure.

Donate to “Bruce across Canada” Donate here. 

We invite you to share this story with your community.

Donate to our organization, so we can continue to help the DMD community to get closer to treatment. Donate here.

 

For more information:

About DMD: Here

About “Bruce across Canada” Here

About reimbursement of drug costs: Here