,

The Power of Giving Back

GivingTuesday – the global day of giving

Join us for the 7th annual GivingTuesday on December 3, 2019!

GivingTuesday is a global day of giving that happens each year after Black Friday and Cyber Monday. It’s a time when Canadians, charities and businesses come together to celebrate giving and participate in activities that support charities and non-profits. There is no “right” way to participate as long as it supports generosity and giving. Donate, volunteer time, help a neighbour, or spread the word.

GivingTuesday was started in Canada by a group of organizations including GIV3CanadaHelps.org, and now includes over 6,500 partners. GivingTuesday was originally started in the US in 2012 by the NYC 92Y and several other community organizations.

Make a donation to La Force DMD here –  or visit our facebook event page here

 

What was achieved in 2018?

Last year, an estimated six million Canadians took part in GivingTuesday and found ways to ‘Do Good Stuff’. Today, as the holiday season is fast approaching,

Now in its sixth year, GivingTuesday kicks off the beginning of the charitable season with more than 6,500 partner organizations registered in Canada and over 40 community movements active in cities and towns across the country.

 

Countdown

 

GivingTuesday Countdown

Help someone afflicted Duchenne muscular dystrophy (DMD)

What is Duchenne? It’s a degenerative muscle disease, afflicting mostly young boys 1-3500. It’s a fatal disease with no cure, taking muscles strength away and leaving young adults in a wheelchair and premature death in their late twenties. Many treatments are on the horizon, but we need your help to raise awareness and funds because there is no time to lose for people afflicted with DMD. Our organization raises funds for promising research and raises awareness to have a unified DMD community across Canada to access new treatment quickly.

 

How to contribute to our cause:

There is no small amount!

Our organization aims to unite the DMD community to raise awareness around a common objective: that of providing access to new treatments as fast as possible and to participate in the funding of promising research projects. We also raise funds for two promising research-based in Canada.

Make a donation to La Force DMD here –  or visit our facebook event page here

 

Other ways to support us:

  • Organize a fundraiser or a sporting event
  • Buy our promotional items to make gifts
  • Share our stories, video and article
  • Display our colours during your outings and events.

 

More links

,

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

Survey for Canadian families living with Duchenne Muscular Dystrophy

Dear Duchenne Family, 

On behalf of Stand for Duchenne Canada, Jesse’s Journey and La Force DMD, thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy (DMD).

 

The purpose of this survey is to gather vital information to submit to Health Canada, describing the impact Duchenne has on the lives of those living with and caring for this rare disease. Currently, there is no way for caregivers and people with DMD to let Health Canada know this. We feel it is critical that this information is considered when therapies are under review with Health Canada. Currently, there are therapies for DMD approved in Europe and the US that have not yet been approved in Canada.

Learn more on the approval process in Canada

How are drugs approved for use in Canada?  •  The approval process for new drugs

 

It’s crucial for our DMD community to help Health Canada understand why we don’t have time to wait for these new treatment options to become available.

 

 

We request that you complete the survey at your earliest convenience as it will be closing on August 2, 2019. This survey should take about 30 minutes to complete. If you are a caregiver for more than one person with DMD, please complete this survey for each.

By agreeing to complete this survey, you consent to allow Stand for Duchenne, Jesse’s Journey and La Force DMD to publish a summary of all the data collected in this survey of which your personal and medical information will be anonymized. The individual information that we collect from this survey will be kept private.

 

 

CLICK HERE TO COMPLETE

 

 

In addition to this online survey, we are also conducting telephone interviews. The interview is vital for us to collect important additional information about your preferences that we would not be able to collect in this survey. All your personal information will continue to remain anonymous. If you are interested in participating in a 15-minute telephone interview and/or interested in getting more involved in advocating to ensure the DMD voice is being heard, please send an email to nicola@duchennecanada.org.

On behalf of Stand for Duchenne Canada, Jesse’s Journey and La Force DMD, thank you in advance for your engagement. If you have any questions about this survey, please contact Nicola Worsfold at nicola@duchennecanada.org. All conversations will remain confidential. 

 


Thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy

 


 

Stand for Duchenne  •  Jesse’s Journey •  La Force DMD

 


CLICK HERE TO COMPLETE THE SURVEY

La Force & Max’s Big Ride in the parliament of Canada

A memorable day

Monday, June 10 was the day that closed the loop of the event of Max’s Big Ride to End Duchenne Muscular Dystrophy.

Our two families are living with Duchenne muscular dystrophy. We share the same battle, that of access to treatment. Yesterday was a memorable day because the government has heard us. There is still a lot of work to be done, but now we know that the government is supporting us in our fight.

Andrew Sedmihradsky, Max’s father, invited Anakin and me to join him and his family for the 2019 Max’s Big Ride event. We shared our stories and raised awareness about DMD and access to treatment. Yesterday was a beautiful demonstration that we are stronger together.

Parliament Hill in Ottawa

Early Monday morning, we met the Sedmihradsky family on Parliament Hill. To begin the day, we were greeted by the Liberal MP, the Honorable Karina Gould. Subsequently, we had the pleasure of meeting the Parliamentary Secretary to the Minister of Health, Pam Damoff. We also met with the Minister of Health, the Honorable Ginette Petitpas Taylor. We had the chance to comply with the Right Honourable Prime Minister of Canada, Justin Trudeau. Raising awareness among key players in Quebec and across Canada is an essential element. Sharing our knowledge of new treatments (currently unavailable in Canada), so that they may become available quickly to children and young adults with DMD.

See pictures on the Facebook page here

More about Max’s Big Ride

For the fifth year in a row, eight-year-old Max Sedmihradsky is taking his dad Andrew and three-year-old sister Isla on a 600 km cargo bike ride to help find a cure for Duchenne muscular dystrophy. Max’s Big Ride had kicked off in Hamilton on Monday, June 3 and had ended on Parliament Hill in Ottawa on Sunday, June 9.

Since 2015, Max’s Big Ride has raised over $170,000, met the Prime Minister of Canada twice and has helped to identify exciting new directions for Duchenne research including the establishment of Max’s Big Fellowship with the Gunning Lab at the University of Toronto Mississauga. Learn more here: Watch a video about the Gunning Lab here.

The approval process in Canada

When you’re suffering from a fatal (orphan) disease for which there is no cure, such as Duchenne muscular dystrophy, each year, month, day, hour and second that separates you from a potential treatment is VITAL.

Nowadays, in an era when science and technology are advancing at the speed of light, new forms of treatment for Duchenne muscular dystrophy, about to be approved to represent real hope. However, these new forms of treatment must go through an approval process that takes between 2 and four years before becoming available to patients.

When rare diseases are involved, patients should be included in this process so that it occurs as quickly as possible and that all provinces across Canada reimburse the medication.

Here is a brief overview of the process

 

We are stronger together

 

 

Marie-Catherine Du Berger

The zebra-striped ribbon as a symbol for rare diseases

The zebra is used as a symbol for rare diseases since about 1940. 

This comes from a quote by Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras.” and “When you hear hoofbeats behind you, don’t expect to see a zebra.”

This is the metaphor Dr. Woodward used to teach students basic concepts about the diagnosis of disease: when examining a patient’s symptoms, it’s better to think of a horse rather than a zebra. It’s a fact that horses are hoofed animals more commonly encountered than zebras, so you should automatically assume that if you hear the sound of hooves, it should be a horse, not a zebra, right?

The national awareness day is on February 29, a date that’s only on the calendar every four years. (It’s moved to February 28 on non-leap years.)

The day was started by the European Organisation for Rare Diseases and is now recognized globally. The symbol for rare disease awareness is a zebra-striped ribbon.

Statistics and facts

Here are a few statistics and facts to illustrate the breadth of the rare disease problem worldwide.

  • There are approximately 7,000 rare diseases and disorders, with more being discovered each day. https://globalgenes.org/rarelist/
  • It is estimated that 350 million people worldwide suffer from rare diseases
  • If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. In Quebec, it is estimating that close to one in 20 people will be affected or have a rare disease, which means nearly 500,000 Quebeckers.
  • 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear.
    • It can take several years to diagnose a rare disease. Many rare diseases have nonspecific symptoms such as pain, weakness, and dizziness, which can make them hard to diagnose.
    • Rare diseases can also be hard to diagnose because they’re unusual. Your doctor may never have seen a similar case and may not even realize a specific disease exists.
    • Besides, it could take weeks or months for you to get an appointment with a specialist. Then, if that specialist was not the right one, you might wait months before seeing the next one. Patients with rare diseases visit more than seven doctors on average before receiving an accurate diagnosis, according to a 2013 study published in the Journal of Rare Disorders.
  • Approximately 50% of the people affected by rare diseases are children.
  • 30% of children with rare disease will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life.
    • Newborn screening for rare diseases is recommended. Screening requirements for newborns vary by country, but they’re increasingly becoming routine.
    • Even without a cure for a particular condition, early diagnosis is essential to prevent death or disability and to help children reach their full potential.
    • Genetic testing can help diagnose many rare diseases, but not all. Genetic testing identifies a genetic cause in an estimated 25 percent to 30 percent of cases.
  • Only 5 percent of rare diseases have treatments. Drug research that helps a limited number of people can be cost-prohibitive for pharmaceutical companies. 

 

 


Finding a support group is important

A rare disease can be isolating for the patient as well as for the caregiver, especially when it’s your child who has the condition.

Connecting with others can be essential, not only for support but also to share information and resources.

 



Sources and interesting links

everydayhealth.com

globalgenes.org

FEBRUARY, THE RARE DISEASE MONTH

February, the rare disease month

Because it manifests itself only rarely, Duchenne muscular dystrophy (DMD) falls within the rare diseases category. It is also a treatment orphan disease. Since this is February, it is pertinent for us to tell you about it. 

 


Rare Disease Day takes place on the last day of February each year. The primary objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. 

Building awareness of rare diseases is important because 1 in 20 people will live with a rare disease at some point in their life. There is no cure for the majority of rare diseases, and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, this month is known for having a ‘rare’ number of days.

This information was provided by rarediseaseday.org.

 


A few distinctions …

  • A rare disease is defined as a disease that affects less than 1 in 2000. DMD affects 1 in 3500, which makes it a rare disease.
  • The RQMO estimates that, in Quebec, nearly one in 20 is afflicted by or carrier of a rare disease, for a total of almost 500,000 Quebecers. Many rare diseases are chronic, progressive and fatal. The CORD estimates approximately, 3 million Canadians and their families face a debilitating disease that severely impacts their lives.
  • Nearly 75% of these diseases affect children, and about 80% of them are genetic.
  • The term “orphan disease” is often confused with the term “rare disease” because the vast majority of rare diseases are orphans in many ways.
  • A medical condition is referred to as an orphan disease if there is no treatment for the disease other than treating the symptoms. For example, prednisone is a medication that affects the symptoms but not on the cause of the disease.

The rarity of these diseases creates obstacles and needs for afflicted people both in our health system and in society in general.

The Quebec Coalition for Orphan Diseases (RQMO) works to provide information and support to patients, their families, and healthcare professionals. Their website is full of relevant information both for professionals and caregivers. These rare diseases are often of little interest to researchers and organizations who fund research. The RQMO aims to advance knowledge about the various rare and orphan diseases by promoting exchanges between patients and researchers.

The Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong collective voice to advocate for health policy and a healthcare system. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.

February 28th is the Rare Disease Day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We wish to emphasize that the information contained in this article come mainly from the RQMO website, the CORD website and the Rare Disease Day website.

We thank them.

 

About DMD

Duchenne muscular dystrophy (DMD) is a disease that affects boys almost exclusively and whose incidence is 1 in 3,500. It is extremely rare that Duchenne muscular dystrophy (DMD) will affect girls. Those affected are usually diagnosed around the age of five, but symptoms may be visible from early childhood. It is a degenerative disease of the muscles caused by a genetic mutation. Duchenne muscular dystrophy (DMD)—for which no treatment is currently available—directly affects skeletal muscles. Without treatment, the consequences of the disease are dire for those afflicted and their families. More about DMD here

FEELING BAD ABOUT THE HOLIDAYS SHOPPING FRENZY?

Giving Tuesday is your opportunity to give back. This is a day dedicated to generosity just as Black Friday and Cyber Monday are dedicated to shopping. Contributing to our cause will help someone afflicted Duchenne muscular dystrophy (DMD). It’s the moment in Canada and the whole world to celebrate giving back and supporting causes that matter to you. We are part of the 3,200, charities and organization celebrating this day in Canada.

 

Help someone afflicted Duchenne muscular dystrophy (DMD)

What is Duchenne? It’s a degenerative muscle disease, afflicting mostly young boys 1-3500. It’s a fatal disease with no cure, taking muscles strength away and leaving young adults in a wheelchair and premature death in their late twenties. Many treatments are on the horizon, but we need your help to raise awareness and funds because there is no time to lose for people afflicted with DMD. Our organization raise funds for promising research and raise awareness to have a unified DMD community across Canada to access new treatment quickly.

 

Give to La Force here

 

About GivingTuesday

GivingTuesday was launched in Canada in 2013 by GIV3 and CanadaHelps.org and lists 15 founding partners. It’s a day for the entire charitable sector and encourages all Canadians to join the movement and give and volunteer for charities of their choice. GivingTuesday was initially founded in 2012 in the US by 92Y and the UN Foundation.

 

How to contribute to our cause:

There is no small amount!

Our organization aim to unite the DMD community to raise awareness around a common objective: that of providing access to new treatments as fast as possible and to participate in the funding of promising research projects. We also raise funds for two promising research based in Canada.

 

Every dollar is taking us closer to find better treatments and the cure.

Give to La Force here

 

Other ways to support us:

  • Organize a fundraiser or a sporting event
  • Buy our promotional items to make gifts
  • Share our stories, video and article
  • Display our colours during your outings and events.

Bruce at the finish line interviewed by Radio-Canada

Monday, August 6th, Bruce has finished his long journey crossing Canada at Stanley Park in Vancouver. La Force team, Anakin’s family and other families affected by DMD were eagerly waiting for Bruce. They were all there to welcome him and sincerely say thank you. He pedalled over 4457 km in 31 days. He faced the heat, the mountains, wild animals and winds to raise awareness about DMD to Canadiens and raise money.

 

To raise awareness about the drug approval process

Cycling across Canada is symbolic. The drug approval process affects all of Canada. Patients affected by DMD and other rare diseases are facing the same problem from one coast to the other. Canada does not have a framework for drug approval for rare diseases.

 

Interview on Radio-Canada

When Bruce arrived, he and, Marie-Catherine Du Berger, La Force’s president and Anakin’s mother, were interviewed by Marc-Éric Bouchard for the show “Les retours de l’Ouest” at Radio-Canada.

 

Here you can watch the interview:

 

Here are a few passages of the interview with Bruce Babington and Marie-Catherine Du Berger:

 

Marc-Éric Bouchard (radio host): Tell us about the beginning of the adventure, how did you decide to undertake this challenge, this bike crossing?

Bruce Babington: In my life, I wanted to do this journey. When I started to treat Anakin, my patient, I came up with the idea of the challenge to raise funds, donations, I’m sorry, and also to raise awareness about the disease in Canada. And also, for La Force Foundation. So, at a dinner, I told my friends about going across Canada between Mont-Tremblant and Vancouver. This idea is a bit unreal, it’s quite an experience!

Marc-Éric Bouchard (radio host): What have you learned about yourself during this journey? Did you learn things you didn’t know about yourself as a therapist?

Bruce Babington: I always think about my patients, the best method to treat patients, especially like Anakin. It’s hard to tell because when you’re pedalling, the only thing you think much of is to reach the next town. It’s surprising because I thought I would have more time to think about other things, but curiously, when the days are quite long, it’s very hard, it’s very hot, the wind is strong also…I didn’t think a lot. It’s really about: look at your pedals, look at your wheels. I didn’t have a lot of time to think about other things.

Marc-Éric Bouchard (radio host): Is there a meaning with his name Anakin and Star Wars? The meaning with La Force, what is it?

Marie-Catherine Du Berger: Anakin is our inspiration for the Foundation. When you learn about this disease diagnosis, you realize that there is nothing much you can do, and that hope lies in the future treatments to come. It’s a bit like the work we do with La Force Foundation: engage everyone for the moment treatments will come to Canada…Because we’re a bit late, in Canada, regarding this disease. There is no effective treatment yet, but there are more treatments to come. There is one that has been approved in the United States, one that has been approved in Europe and that is different. For us, the purpose of La Force is to raise awareness and try to get ready to encourage faster approvals. This is not only the case for DMD, every rare disease also has almost the same treatment for drug approvals. Here in Canada, we have huge gaps. It really matters to us.

Many thanks go to Marc Fournier and Marc-Éric Bouchard for giving us exposure throughout Canada. Note that August 6th is a holiday in British Columbia. So, it’s been a great opportunity for our event. We also say a big thank you from the bottom of our hearts to Bruce for endorsing our cause in taking up the personal challenge he wanted to achieve for a long time. Beyond the funds raised for researches, this bike crossing gives hope for Canadian families living their everyday life with DMD.

 

You still can support Bruce for his bike crossing by making a donation.

Together for change

TEXT AS PUBLISHED IN PORTFOLIO MAGAZINE SOTHERBY’S

We are thankful to Sotherby’s International Realty team for publishing this article.

“Very little is done in Canada for the DMD and parents are send back home with no hope when it is no longer the case. On long term La Force is to become a guiding light for patient with DMD”

The Fondation La Force was created following the diagnostic of Anakin Lacase (son MC president Foudation).  Muscular Dystrophy is a terrible genetic disease, it is fatal, with no cure and lead to premature death (about 20 years old). Looking at your kid slowly dying, is the worst for parents, family and friends.  The Foudation was the positive that resides in our decision to become actors rather than spectators in this terrible tragedy.  Very little is done in Canada for DMD, Parents are most often faced with the sole option of having to prepare for early death when this is no longer the case. New and emerging technology provides hope but it’s practically inaccessible, mainly due to the disease’s lack of notoriety. People would like to help but most don’t know about the challenges associated with rare disease treatment accessibility and don’t know how they can help. Furthermore, without strategic and leveraged effort, individuals’ voices are ineffective. Those who want to help need to do so in unison and in a highly focused way to bring about change.

«Strengh in Unity»

Our long-term goal is to become the leading representative group for patients with DMD in Canada.  Our mission is to make DMD treatment available immediately to kids in need. Our approach is first and foremost to raise consumer and political awareness by way of information campaigns. We use grass roots sporting events, social media leverage, representations and high level contacts to achieve our goal. We are also participating in the funding of promising research we have to dedicated funds one for Dr Rudniki and one for Dr Jérôme Frenette.

«La Force: powered by the community»

The effort of team 1 VIE-Tess combine with the right use of web marketing had a huge impact this year for La Force.  Our online video had over 80,000 views, we had extensive local media coverage and a segment on RDS TV show…

All this media visibility, gave us the right tools to have access to a new treatment not approuved in Canada.  The rise of the community in Mont-Tremblant have been simply amazing, last year people in the community (not only close friends) organise spontaneously fund raising event of all kind. La Force have been powered, by pure compassion and every sporting events and every single person wearing our t-shirt have built a movement and made us believe we can make a difference in the race to a cure.

The strength to change things

Becoming a mom is living every moment projecting yourself into the future with your child. Parenting has its share of daily challenges, but the sleepless nights rocking baby to sleep, organizing a birthday for a teen or repainting your son’s first apartment is worth more than anything else.

Excerpt from Journal Accès, continue reading here (french only)