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Teaming up to take down Duchenne

Research and collaboration are bringing Canadians closer to a cure than ever before. However, many parents fear that access to treatment may come too late for their child.

by Denise Deveau, Sep 6, 2019, > published on Maclean’s

 

 


For Nicola Worsfold and her husband Ed, the day they were told their six-year-old son Owen had Duchenne Muscular Dystrophy (DMD) is one they’ll never forget.

 

Nicola Worsfold – “It was like someone took a huge sledgehammer and knocked us off our feet. We found out that there was nothing we could do because, at the time, there was no cure or medication that could help.”

 

A progressive muscular disorder, DMD is caused by a genetic mutation that prevents the body from producing the structural protein needed to protect muscle cells. The Canadian Neuromuscular Disease Registry estimates that there are less than 800 cases in Canada, with almost all affecting boys.

As it stands today, DMD is fatal. A child with the disorder becomes weaker over time until they succumb to the disease in their early to mid-twenties. It can be inherited or, as with Owen’s diagnosis, the result of a random spontaneous mutation.

 

Read the full article here

CARL’S RESILIENCE

Notes from the “Living with DMD” web-doc Tecima Productions team.

Our small production team travelled across Canada, meeting with families whose children have Duchenne Muscular Dystrophy (DMD). We met with Dakota (age 6), Anakin (age 11) and Carl (age 35) at critical moments in their journey. Our goal was to produce a Web-doc in three acts, to raise awareness about DMD by living it through the eyes of the families suffering because of it. This degenerative muscle disease, for which there is no cure, usually leads to premature death in the patient’s early twenties … But, guess what? … this isn’t always the case, because Carl Marier has defied all odds and is now aged 35. When we met him we were overwhelmed by his joyfulness, his presence, and his sense of humour, even if he is the youngest person living in a residence for the elderly.

 

Surviving 3 major operations

Today, Carl is connected to his respirator 24/7; the respirator sends the air directly to the lungs, a tracheotomy allows him to limit the colds that could turn into pneumonia and his gastrostomy helps him to eat. As he grew older, it was harder and harder for his family to care for him until it became impossible as he needed to be cared for day and night. Because of a lack of adapted facilities, their only option was to send him into a residence for the elderly.

 

Alain Marier, from the documentary  Living with DMD– ” We had to place Carl, who is 34 years old, in a residence for seniors. I’ll tell you, almost three-quarters of the seniors there do not know where they are. They have Alzheimer’s or dementia. He’s the baby in the place because he’s the youngest.”

 

The power of a positive attitude

When we asked him what quality he developed because of DMD, Carl immediately answered “resilience”. He greeted us in his room with a great amount of energy and punctuated our visit with several jokes. He also told us he has many friends and he loves to socialize with them in the residence. We also witnessed a tender relationship between him and his step-mother, Sonia Gélineau.

 

Sonia Gélineau – from the documentary Living with DMD– “Carl came into my life when he was nine-and-a-half years old. Later, in 2001, his father and I were married. Living with the disease is not always easy”.

 

Faced with a great deal of suffering and inevitable destiny, what we witnessed from our encounter with Carl was how the strength of character, a solid positive attitude, and unfailing love link together in the face of adversity that is difficult to imagine.

 

Enjoy the web-doc. Thank you for sharing.

Dakota’s big smile – A race against time to access new treatments

The documentary “Living with DMD” is produced by www.tecima.com

 

A Race Against Time to Access New Treatments

Duchenne muscular dystrophy seen through the eyes of the families

There are over 7,000 rare diseases in Canada. Duchenne muscular dystrophy (DMD) is one of them. DMD afflicts children, especially young boys, and sometimes girls. This degenerative muscle disease causes loss of the ability to walk, heart and respiratory failure, and usually leads to premature death in the early twenties. Tecima Productions produced the “Living with DMD” documentary to tell the story of people living with DMD and their families at crucial moments in their journey: those of Dakota, age 6, Anakin, age 11, and Carl, age 35.

Anakin’s Loss of Autonomy

For other children, being 10 years old is a period for developing and gaining independence. For 10-year-old (in 2018) Anakin who has DMD, it’s a different experience, as he is progressively losing autonomy and is forced to seek help from his parents to get out of bed, in and out of the car, etc. It’s also during this exact stage that he becomes fully conscious of his destiny.

 

Bruce Babington, an excerpt from the documentary Living with DMD “The last year has been tough for him. The disease has progressed quite significantly, and he’s losing the ability to use his legs. He cannot walk great distances, and he’s struggling to maintain the strength he has in his legs. You can see that it’s beginning to affect him both physically and mentally.”

 

A Race Against Time to Access New Treatments

Rare diseases such as DMD are fraught with all sorts of obstacles for families. There is very little funding for research, it is difficult to access new treatments, and long-term care for young adults is costly and often not available to families.

 

Marie-Catherine Du Berger excerpt from the documentary Living with DMD “It’s a bit of a race against time because the faster you get the treatment, the better it is. But there are many obstacles in the drug approval process here, with repayments, financing, etc. By the way, it is done for us.”

 

Read the story about Bruce Babington, who cycled across Canada in July 2018 to raise funds and awareness for DMD.

 

Help Us Raise Awareness!

After reading this article or watching our documentary, you can certainly feel the urgency of sharing the story of these three families. We want to educate the public about the realities of people living with DMD, on behalf of those who have suffered, those who suffer now, and for future generations. Our aim for this project is to get better funding for research, to make new treatments more easily accessible, and so that long-term care becomes better available to young adults. We are doing this so that they have a chance for a better life.

How can you help us? Watch our documentary, continue reading our article, and share them with your communities. Every action counts.

Enjoy viewing our documentary and thank you for sharing it in your community

 

The “Living with DMD” documentary was produced by www.tecima.com

DAKOTA’S BIG SMILE

Notes from the “Living with DMD” web-doc Tecima Productions team.

Our small production team travelled across Canada, meeting with families whose children have Duchenne muscular dystrophy (DMD). We met with Dakota (age 6), Anakin (age 11) and Carl (age 35) at critical moments in their journey. Our goal was to produce a web-doc in three acts, to raise awareness about DMD by living it through the eyes of the families suffering because of it. This degenerative muscle disease, for which there is no cure, usually leads to premature death in the patient’s early twenties. When we met the Albert family, we discovered a happy family, despite the suffering. But mom Kristen’s smiles and laughter—that resonate throughout the household hide a great sadness: knowing that the family’s middle son Dakota is afflicted with DMD.

A Painful Projection of the Future

Today, this ebullient early-thirties couple are the proud parents of (get this) a family of 5 children. When the diagnosis fell, Dakota was just three years old. Projecting such a tragic fate for a 3-year old (at the time) is beyond a broken heart. It’s also a scenario that follows you in all of your life’s activities.

 

— Kristen Albert—Excerpt from the documentary Living with DMD. “You know, you have this outlook on your family, thinking, you’ll have happy, healthy kids, and then, all of a sudden, we find out that our middle boy is going to die before he should. It’s hard to deal with that every day.”

 

A DMD Diagnosis… and autism

Unfortunately, in addition to DMD, Dakota has also been diagnosed with autism. This reality has brought the family to face another dilemma: whether or not to administer corticosteroids that can increase the symptoms of autism.

 

—Aaron Albert—Excerpt from the documentary Living with DMD. “I would like to stay away from steroids for as long as possible. Because my son has autism as well, he’s already having some developmental issues, behaviour-wise. He has to deal with anger and shows aggressive behaviour; steroids can make that worse. They can cause obesity, osteoporosis and behaviour issues. We’ve decided that we can’t really make that worse right now; he needs help with his autism first.”

 

Despite all this sadness and the dilemmas he faces, Dakota has one of the most beautiful smiles we’ve ever seen. Mom Kristen’s laughter lights up their home because, despite the suffering, they are happy people.

How can you help us? Watch our documentary, continue reading our article, and share them with your communities. Every action counts.

 

Enjoy watching and thank you for sharing in your community.

 

The documentary “Living with DMD” is produced by www.tecima.com

 

* It should be noted that the Albert family’s story is a specific case, each DMD and autism diagnosis has its own unique characteristics and details. Taking corticosteroids or not in this situation is the personal decision of each parent. The Albert family has also had access to a corticosteroid-like treatment since the documentary was shot.

More about corticosteroïdes here.

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