Today, June 21, the world observes the Global Day of recognition of ALS/MND.
In honour of that, I thought I would help raise awareness by sharing some facts with you that some of my friends and family have been surprised by.
Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.
ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.
Alliance members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.
Why 21 June?
June 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.
Join the fight… Spread the word
Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.
Ways to spread the word:
Use the hashtag #ALSMNDWithoutBorders to share information and education about ALS/MND on social media!
'My dad’s been my biggest hero my whole life'
The first time we met Carol Skinner in 2015, she was so relentlessly positive, so often smiling in the face of approaching death, the pair of us (writer, photographer) left the apartment holding back tears.
(Strange. Was she not the ailing one?) Three years later, she’s very much alive — surprise, surprise — and still fighting the good fight against ALS.
“I was living as though I was dying,” she said of the early months with the terminal illness. “I got my affairs in order. I gave away things like my high school yearbook and my wedding dress.”
Then got back to living. Last weekend, for instance, she returned to the annual ALS walk, where her teams have raised more than $26,000 during the past four years. Fortunately, Skinner has strong family support, as exemplified by her father, Peter, who has become “an assistant advocate.”
She says she’s not surprised. “My dad’s been my biggest hero my whole life. He’s always, always told me I could do anything, my whole life.”
The only daughter in a middle-class Montreal household, Carol remembers her father being absent for big parts of her childhood as he travelled the world as a pulp-and-paper executive.
“He always tested me on geography. He gave me my love of travel and other cultures. He would bring me dolls from all these foreign countries.”
Her father instilled a work ethic in the children, she said, which served her well in her career as an art therapist.
She knows how difficult the illness has been on her parents, who had moved to Ottawa, partly to help her with errands and ongoing care and support, not to mention multiple holidays.
“Dad is very sensitive guy on the inside. He comes across as a fun-loving, kind of sarcastic guy, but he’s a softie on the inside and I know it’s breaking his heart.”
ALS is a neuromuscular disease that attacks, in layman’s terms, the body’s central wiring system. Over time, the brain and its main muscles no longer communicate properly, making limbs hard to control. Eventually, speech, breathing and swallowing are affected.
Skinner can now only walk short distances with a walker, and otherwise relies on a wheelchair. She can’t load the dishwasher or lift her arms very high. She now has daily nursing care. But her breathing and swallowing are normal and her spirits, many days, are good.
So, she’s planning a trip to Tuscany later in the year, ALS be damned. Life goes on.
“You have to be grateful for what you have instead of regret what you don’t have, because then you’ll never be happy.”
To contact Kelly Egan, please call 613-726-5896 or email firstname.lastname@example.org
Egan: As ALS steals his daughter, a father helplessly watches on
ALS kills 80 per cent of sufferers within two to five years, a terrifying statistic for Carol Skinner, on the eve of her fifth anniversary.
Today she uses a walker inside her small apartment — a wheelchair everywhere else — and doesn’t drive or work anymore, or even cut her own food, or wash her own hair. On a good day, she can write her name. On a bad day, there are things she can hardly speak of: “I’m scared to death.”
Peter Sharman would trade places with her in a heartbeat. It is what a father would do for his child.
Since Carol’s diagnosis in September 2013, Sharman, with his engineering brain, has been making notes about what it’s like to be the parent of a child with a terminal illness. The short version runs to 19 pages, parts of which make for a heart-breaking read.
“I remain frustrated that it wasn’t me that was diagnosed,” he writes. “I’d give a lot to take this away from Carol and so often feel regret that it should have been me, because I’ve lived a relatively long, busy and fulfilling life already.”
We’re on the 21st floor of a west-end highrise, the windows giving way to a breathtaking view of the Ottawa River. It is beautiful outside, tidy and luxurious inside, where he stands relaxed in shorts and sock feet, a few sleeps before another Father’s Day.
Of course he would trade for his daughter’s suffering. It is what a parent does. To protect is to love.
We seldom focus on the parents’ agony in the face of terminal illness, a father’s helplessness. Dr. David Taylor, vice-president of research at ALS Canada, has seen it up close.
“It’s the pain,” he says, “and it’s a different, unimaginable pain. You see in their faces. They’re watching their child go through this and having to consider the notion of the child dying before they do.”
With a trace of an English accent, Sharman is retelling the story of how he and his wife, Louise, were told about Carol’s diagnosis. They were on a cruise on the Black Sea, just outside Istanbul, when a phone message arrived from Travis, Carol’s husband.
There was shock, of course, and tears, the kind a stiff drink doesn’t take away. What, even, was ALS?
They abandoned the second half of the cruise and flew home immediately, despite the couple’s urging to finish the trip.
“I tell you how you compare it: Somebody just died. There’s no difference. Because to me, she had died, in that instant.”
Life was about to change, in ways he never imagined. Partway through Carol’s illness, her brother, Don, died suddenly on the Caribbean island of Saint Martin. Peter and Louise had now lost their oldest child at age 52.
Newly into retirement, his back, meanwhile, gave him loads of trouble, resulting in surgery. He had to give up golf, which he played four times a week, and a beloved sports car, which he couldn’t bend into. Her world was shrinking — “It really tore me apart understanding that she’d never walk again” — and so was his.
They sold the family home in Montreal and moved to an apartment in Ottawa, in large part to support Carol and Travis. Every day, she is on his mind. How could he help but not continually intrude?
“My personality went from type A to type L (for “lost”) — and I don’t feel I’m me anymore. I know others see that and understand a little bit,” he wrote. “But pity is the last thing we need.”
He is a charmer, with these playful eyebrows. Born in England, he survived the Blitz in London during the Second World War and arrived in Canada as a teenager, landing in tiny Ocean Falls, B.C., a beautiful but isolated mill town of maybe 2,000 souls.
“I lost my accent in three weeks.” School wasn’t for him — “I’m the only guy from England who failed English” — but he had a salesman’s touch and a driving ambition. He was soon working in the mill, learning all aspects of the pulp and paper trade.
“I failed Grade 11 but I owned an engineering company. How do you do that?”
In 1961, he was off to Vancouver, where he met and married Louise. Three children followed, then a move to Montreal to start an office for a pulp and paper giant. It would become home. Carol was born seven years after the boys, the best mistake, as they say, the couple ever made.
“She’s still so cheeky,” he says. “Still the same. ALS, no ALS, she’s the same as she was at three years old.”
Her teenage years — when she babysat for Montreal Expos great Gary Carter — were a mystery to him.
“Between the ages of 13 and 19, my daughter left the human race. She’d have all these friends over from school, university, at the pool. I never understood a word they said.”
Travel was the family’s lifeblood. He estimates he’s visited 135 countries and once travelled 150,000 kilometres a year, away from home for weeks at a time. To this day, trips — cruises in particular — are a way they best bond with Carol, with wonderful backdrops such as Costa Rica, the Baltics or corners of Asia.
Since her diagnosis, he’s dived into the ALS community. There is no effective treatment for the illness, made famous by baseball great Lou Gehrig. And he’s quite shocked by the lack of government support for research.
Look at the millions spent on heart and stroke, or cancer, or diabetes, he says.
ALS, he says, gets zero direct dollars.
ALSO: Ottawa opens ALS centre amid ‘massive’ advance in basic research
There are some 3,500 Canadians living with ALS every year, a number he thinks is too small to spur big pharma to explore new medications.
“Is 3,500 lives a year not worth it? Not worth anything? When you can spend $605 million on the security of Charlevoix?” he asks of this month’s G7 meeting in Quebec.
Sharman accompanied his daughter to a recent meeting of the ALS caucus on Parliament Hill, a group of MPs formed in the wake of the death of Ottawa-Vanier MP Mauril Belanger of ALS. He brought the room to a standstill, his daughter says.
“I consider myself an assistant advocate to Carol.”
His mission now, and it is a big one, is to help create enough awareness of ALS that momentum builds for broader public understanding and more urgent scientific research.
“I guess that would be the best Father’s Day gift. Have a drug for her and let me go.”
Ottawa opens ALS centre amid 'massive' advance in basic research
The treatment of Amyotrophic Lateral Sclerosis has not advanced much since baseball great Lou Gehrig died of the disease in 1941, a story that transcended the Yankees and sport in general.
But hope is building, with more progress in the past 10 years than in the previous 60. Ottawa is onboard, with the opening in May of a neuromuscular research centre, based at the Civic campus at The Ottawa Hospital, where muscular dystrophy and ALS will get special attention.
Experts say the exact cause of ALS has been difficult to pinpoint while treatments have been elusive because of the complexity in how the brain interacts with motor neurons to make muscles work on command.
Dr. Ari Breiner is one of seven “clinician investigators” at the centre, which operates out of 5,000 square feet of space that should, in theory, have contact with all 150 or so ALS patient in the area.
“I think it’s very exciting. Ottawa has always had a strength in basic science research in neuromuscular diseases,” he said this week. Indeed, he points to an overall network of about 200 who are working in clinics or labs (university or hospitals) on neuromuscular diseases.
Egan: As ALS steals his daughter, a father helplessly watches on
Though just off the ground, he’s predicting the first clinical trials in Ottawa will begin later in 2018 — probably in collaboration with another centre, probably testing a new drug. (Partnerships are important here because the local patient pool is relatively small and many would not qualify for trials.)
So, why is ALS so tough to crack?
Dr. Breiner says scientists have a decent understanding of the “downstream” effects of ALS, such as a protein buildup on the motor nerves. But the “initiating event,” he says, the original “insult,” is the big question.
“Understanding the biology of the disease is the big thing,” though genetics and environmental factors are thought to be part of the puzzle.
Dr. David Taylor, vice-president of research at ALS Canada, says there have been massive advances in understanding the disease at the molecular level in the past 10 years.
“I am of the belief that we are on our way towards treatments,” hopefully within the next 10 to 20 years, he said this week, predicting there will be multiple therapies to at least slow down the disease.
An immediate roadblock? Funding. He agreed with Peter Sharman’s contention that there is little sustained, direct funding for ALS research from the federal government.
“It’s hard to have a roadmap when you’re working on fumes,” he said. “It’s hard to have a roadmap when you don’t have enough money to build the road.”
It only makes sense that cancer research, for instance, would get more funding, because one in three people have a cancer episode during their lifetime. “It is a case of the rich get richer, in a way, because diseases like cancer have such a large grassroots footprint.”
The ALS Ice Bucket Challenge was enormously successful in 2014, but the funds only went so far, given research is an ongoing, multimillion-dollar endeavour.
The difficulty with solving the ALS puzzle, he explained, is understanding the workings of the entire central nervous system, from the brain to the tips of the toes.
“The heart is a pump,” he said by way of example, “the brain is still being understood.”
The Ottawa centre is an important part of the solution, he said. Not only will it provide care from many disciplines (physio, speech therapy, social workers) but it should remove the need to travel to Montreal or Toronto for trials.
ALS Canada funds between $1.5 million and $2 million annually in research, Dr. Taylor said, putting the total of all agencies across the country at roughly $4 million. Even a yearly commitment of $5 million from the federal government, for four or five years, would make a massive difference, he concluded.
“I mean, that’s a rounding error for them.”
ALSO: ‘My dad’s been my biggest hero my whole life’
Congratulations to the Living Loving Laughing Walkers and our supporters for raising $6705 at the 2018 Walk for ALS! Since 2014 our walk team has raised well over $27,000 for the ALS Society of Canada! Woo Hoo! If you include Robin's Curling for Carol, Dad's Amazing Evening, the Ryder's Christmas campaigns, and Heather's Hudson Valley Walk to Defeat ALS, as a team we have raised over $45,000 for ALS research and care (and that is not even including the Ice Bucket challenge donations). WE ARE MAKING A DIFFERENCE! I can't even tell you how you have lifted my spirits and provided me with hope with your generosity.
It was a beautiful day as you can see and I am so grateful to my team for travelling from Calgary (Keith!), Toronto, all over Quebec, and of course Ottawa!
It was such a pleasure to meet many people living with ALS whom I have connected to via social media and those who have searched out my blog. I had no idea how many people actually read this! It was so touching to meet you all in person and now that I know you look to this blog for help, I will be more diligent in my writing.
Special thanks to Veronique at Social for hosting our beautiful and touching lunch. Congratulations to your amazing mom Lise, who though just diagnosed a few months ago, has already advocated on behalf of ALS by participating in a CTV News interview as well as an Ottawa Citizen interview, well done!
Also, special thanks to the Brookstreet Hotel for donating a night's stay for the silent auction.
Our ALS community is a group of loving and fierce warriors! Impossible to name you all but know you are always in my heart.
June is ALS Awareness Month in Canada and it hit me like a brick. I have been sick in bed with a cold for a week now. As most of my energy is spent dealing with ALS, when you have a cold, you have nothing left to fight with. I am doing my best to rest and recover because 1 week from today is the Annual Walk for ALS at the Ottawa War Museum. As much as I want to roll over and give up (I feel like there is no fight left in me sometimes), your messages of support and sponsorship of the walk help to lift me up and keep fighting.
Moments to Live For...
Even with a cold it is hard to feel sorry for myself when I can still appreciate moments like these...
Looking forward to my 5th Annual Walk for ALS on Saturday June 9th in Ottawa! So glad Keith will be here to join the Living Loving Laughing Walkers. Thank you for your ongoing support in sponsoring me or if you are in town, feel free to join our team. This year after the walk we are gathering at Social in the Byward Market for lunch. Hope to see you there!
New research centre a 'game changer' for neuromuscular disease patients
More from Elizabeth Payne
Published on: May 2, 2018 | Last Updated: May 2, 2018 5:57 PM EDT
Ottawa neurologist Dr. Jodi Warman Chardon recalls seeing patients with neuromuscular diseases — including muscular dystrophy, ALS and others — getting on the train to Montreal to take part in clinical trials not available in Ottawa. Some had to travel much farther.
The image has stayed with her.
“So many people are desperate to participate in clinical trials,” she said. It made her realize more must be done to help make therapies and research available to Ottawa patients closer to home.
The Ottawa Hospital’s new neuromuscular research centre, which opened this week at the Civic campus, will enable patients to take part in clinical trials here in the capital, which will give them access to new treatments that are not otherwise available.
And it will do more than that, said Warman Chardon. The centre will create a hub in Ottawa for physicians and scientists to collaborate on new treatments. She calls it a “game changer.”
Ottawa has one of the highest concentrations of neuromuscular researchers in the world. The new centre will expand the work being done and bring patients and their physicians into the mix.
“We want to be the Stanford of Canada,” said Warman Chardon, who is also associate scientist at The Ottawa Hospital and assistant professor at the University of Ottawa. “We have got a plan to become one of the largest neuromuscular research centres in North America, and the world.”
Among other things, the new centre will allow researchers to get access to blood samples from Ottawa patients to help with their research, said Dr. Robin Parks, a senior scientist at The Ottawa Hospital and professor at the University of Ottawa who helped establish the centre with Warman Chardon.
Patients and their families are also cheering the opening, which, according to hospital CEO Dr. Jack Kitts, gives Ottawa a glimpse of the kind of cutting-edge health care the new Civic campus will bring to the area when it opens. The new campus, to be built on the eastern edge of the Central Experimental Farm is in the planning stages.
Ottawa’s Teresa Buffone, who has family members with myotonic dystrophy, has been one of the forces pushing for the new centre.
As a “super advocate” for people with myotonic dystrophy, Buffone has devoted recent years to raising awareness about, improving treatment for and expanding knowledge of the rare disease that can have a devastating impact on patients and their families.
She set up the country’s first support group for patients with myotonic dystrophy as well as a patient registry and she led a fundraising drive for more research. That work was among efforts that paved the way for the centre.
“People who have these neuromuscular diseases have multi-system difficulties and they just get worse over time. Having a centre where they can go and be followed on a routine basis means the specialists can affect medical interventions at an earlier stage rather than letting the disease progress to a critical stage.”
She, too, said access to clinical trials in Ottawa will make a huge difference to the lives of patients with various neuromuscular diseases. Patients who wanted to participate in a trial involving myotonic dystrophy in the past have had to go to Rochester to do so, which was impossible for many.
She also said it is crucial to future breakthroughs that researchers are able to meet patients personally. She said she had been at conferences in the past in which researchers working on the disease had never met a myotonic dystrophy patient.
“Researchers need to see the effectiveness of these diseases and how they manifest over time.”
She said there are 10,000 people in Eastern Ontario with various neuromuscular disorders.
“I am so happy that it finally came about,” she said of the research centre.
It's walk season again! Thanking you in advance for your help in funding ALS research and client services! As you are aware through my last few blog posts, ALS Canada receives no government funding. It is only through grass roots efforts and your generosity that ensures a possibility of a future where no one should have to suffer with ALS.
The WALK for ALS is the single largest fundraiser for ALS in Canada - Last year $4 Million dollars was raised to support vital research and critical support services for people living with ALS.
This is a time of unprecedented excitement as a result of recent discoveries, and unparalleled momentum following the success of the Ice Bucket Challenge in 2014. We have witnessed more progress in the last 5-7 years than in the past century. Today, many of the top researchers in the world believe we are positioned to find treatments that can significantly alter the course of the disease in the future.
Thank you for your support in either sponsoring me for the walk and/or joining my team on Saturday June 9th!
On Tuesday April 17th, I was invited along with my father to attend the all-party ALS Caucus meeting at Parliament Hill. It was an honour to attend and speak on behalf of Canadians living with ALS.
I would like to share with you the message I brought to our MP's.
First and foremost, to all who attended, I appreciate you volunteering your precious time, for the work that you do and for your intent to take ACTION for those of us living with ALS.
I was diagnosed with ALS on September 19, 2013 at the age of 41.
At the time I was working for the Canadian Mental Health Association. I was an art therapist, facilitating groups for individuals with both a mental health and substance use disorder. One day, I took the afternoon off work for a medical appointment with a neurologist. I walked in, had an EMG, and walked out with 2-3 years left to live.
This is my 5th year living with ALS.
I am very lucky to have the support of friends and family. It is difficult speaking with my father here today. Obviously he is suffering and would do anything to take away my ALS. But the reality is that this has been our conversation on a daily basis for the past 5 years.
There is not a moment that goes by that I do not think of ALS. It has stolen my future, my sense of adventure, and independence. ALS has brought anxiety, depression and every day I discover a new symptom of progression taking away any and all control I have over my life.
I had to leave a job I was very proud of, I lost the ability to drive, to walk, and to shampoo my own hair.
I still consider myself to be young! 10% of individuals living with ALS live longer than 10 years. But instead of feeling hopeful, that terrifies me as I live in fear of the time when I will become trapped in my own body, unable to move, yet fully aware of what is happening around me. I would prefer a quick death, or for my progression to halt where it is now, or even better, a cure.
ALS is more common than you might think. The incidence of sporadic ALS shows little variation in the western countries with an estimated lifetime risk of 1 in 400 (NIH).
The reason there are a relatively small number of Canadians living with ALS at a time is because of its devastation and how quickly it kills.
The federal government has a duty to protect the lives of Canadians. Whenever there is a global or national event where Canadians are killed, the country is outraged and our goverment does whatever it can to prevent the event from happening again, spending funds on investigations and inquiry. Where is that same resolve when the killer ALS kills thousands of Canadians every year?
I have never been as hopeful since being diagnosed with ALS as with the passing of Motion 105. One year ago M-105 passed unanimously to support research and implement a national strategy to eradicate ALS at the earliest opportunity.
I speak with many people from the ALS community through social media, clinic visits and fundraising events. Many of us literally had the wind knocked out of us with the passing of the Federal Budget. What we saw was $0 in dedicated funding for ALS. We did see the spending in neuroscience, and while that may help bring some new discoveries, there is no guarantee that any of those dollars will target new research into ALS. Was that not the earliest opportunity? Where is the action?
I would like to personally thank Tammy Moore, Dr. David Taylor, and Lauren Poplak of ALS Canada for their determination and fighting spirit in tackling ALS on all fronts. It is a formidable job, one in which you are constantly grieving the lives of the people you are fighting for, yet they do it with compassion, strength and tenacity.
I would like to thank all MP's (and of course their staff) who attend the ALS caucus, and who advocate on our behalf to the Federal Government. Thank you to Francis Drouin the chair of the ALS caucus, for your character and your determination on our behalf to help in a variety of issues that affect Canadians living with ALS. Thank you Marc Serré and Judy Sgro for your ideas and dedication to our cause.
Also a huge thank you to Kevin Bosch the Vice-President of Hill+Knowlton Strategies for your excellent tour including introductions!
I am so pleased to announce my acceptance of nomination and selection by the Board of Directors of the International Alliance of ALS/MND Associations to serve on the Advisory Council.
This is quite an honour and my pleasure to further the cause of ALS/MND on a global scale. Many of you who know me know that international collaboration is near and dear to my heart. I have a passion not only for travel, but of meeting people of diverse cultures, thoughts, opinions and knowledge. Some of my tasks will include providing input on International Advocacy for PALS/CALS, and being a "voice" of PALS to advance the Alliance's Mission: to create a world free of ALS/MND.
United in the worldwide fight against ALS/MND
ALS and MND are abbreviations for Amyotrophic Lateral Sclerosis and Motor Neurone Disease respectively. ALS/MND is a neurological disease that affects over 400,000 of the world’s population and kills over 100,000 every year.
What a fantastic day we had at the 5th Annual Curling for Carol Bonspiel. What an amazing group of people who showed up, everyone was so friendly and it was so fun to have it on St. Patrick's Day!
A huge thank you and shout out to Robin, without her this event would never happen. Robin was committed to having an Annual Bonspiel, and for anyone who has ever organized a charity event, you can imagine how much work is involved. I joke that she didn't know what she was getting herself into 5 years ago by insisting upon making it an annual event, as I wasn't supposed to live this long!
Also a big thank you to Coralee who handled so much of the behind the scenes and registration, and does it all with such enthusiasm. Robin and Coralee are so busy working the event, they never even have a chance to curl!
Of course thanks to Brittany and Conan for doing an amazing job of getting so many teams signed up!
Thank you to all of the teams who participated. You are truly a unique and energetic group of people!
We had an incredible array of prizes this year. Thank you to our sponsors and to Brittany, Mom & Dad for pounding the pavement for raffle donations. I think we sold an unprecedented amount of tickets this year, I mean, who could say no to mom & dad???
Thank you to my amazing CMHA peeps and partners, and new friends I met at the event.
Thank you to everyone who donated, helped out and supported us behind the scenes. Because of you we raised $2900!
This event came at the perfect time for me. It happened when I was feeling quite down, hopeless and dejected. Not only because winter is a particularly difficult time, it's tough to get out in the snow and cold. But also because if you read my #forgottenbutnotyetgone blog post, you'll know that despite advocacy efforts $0 of the 2018 Federal Budget went towards research for ALS. It was particularly frustrating due to the unanimous all-party decision to vote in favour of Motion 105 back in April, where they voted to combat ALS by funding research and to launch a comprehensive strategy to eradicate ALS at the earliest opportunity. All talk, and no action.
It is grassroots efforts and community funding through events like this that will continue to make a difference in the lives of people living with ALS. Whenever I feel like giving up, it is people like you who won't let me! So thank you all for your love and support, I certainly wouldn't be here without you.
We even made the news this year! If you click on the button below, it takes you to the right news page, however, you must click on the Saturday March 17th video to see us curling! We are at 23 minutes and 10 seconds. Beautiful form Sean, Travis says you should be expecting a call soon from the Canadian Olympic Committee!
Stephen Hawking was not only a genius and a legend, but someone who was known not because he had an ALS diagnosis, but for the man he was.
Please check out the article below written by Leslie Young. Fabulously done, make sure to click on the "listen" button to have a small Professor Hawking experience. It is an honour to be quoted and included in one of his many tributes.
I have also included an interview with John Oliver, so we can share in his fabulous sense of humour.
On April 6, 2017, M-105, a bill introduced by MP Judy Sgro seeking ALS research support from the Federal Government passed unanimously with a 283-0 vote. The text of the motion states: That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House: (a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and (b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.
After participating in the first ALS Caucus meeting in October of 2016, and meeting with then Minister of Health Jane Philpott that same winter, I knew it was improbable that ALS would receive funding from the Canadian Government in 2017 as it would take time. However, my hope was renewed after the above mentioned motion was passed unanimously. I mean, how often does government of all parties come together and unanimously support any cause? So when the Federal Government came out with budget 2018 this past week it felt like a punch in the gut when despite an 18.1 billion dollar deficit, there is $0 invested in ALS research. I don't understand, what is the point of a motion passing if there is no action to accompany it? The bill states "at the earliest opportunity", that opportunity came and went with the Federal Budget 2018.
It took my breath away, as does ALS.
I am heartbroken as I felt like all of my advocacy work was for nothing. I'm not sure why thousands of Canadians dying by slowly becoming paralyzed bit by bit, becoming "locked in" as you see in horror movies is not shocking or dramatic enough to become actionable by our first world government. Of course if there was a plane crash or terror attack, unlimited funds would be available to address Canadians dying. I feel #forgottenbutnotyetgone
I am aware, and do appreciate that our government has invested a large amount to Neuroscience. But there is no guarantee that 1 dollar of that will go towards ALS research. Of course any brain discovery may help lead to new revelations about the cause and/or treatment of ALS, but that is simply not good enough. Without targeted ALS Research, Canadians will continue dying in a terrifying manner every day, including myself.
I'm not quite sure what else I can do in order to advocate to our government, but thanks to the incredible support I have received since posting my frustration on Facebook, I promise I will keep fighting as best I can. Unfortunately that means continuing to ask friends, family and communities to persevere with fundraising on a grassroots level, even though you have all given so much already.
Everyone that takes the time to advocate and donate to ALS today is starting something big for tomorrow.
The Canadian government clearly wants to sit back and take their time, slowly going through the protocols of day-to-day politics, but ALS is urgent. ALS is “now or never”. Unfortunately, like with all diseases, there is a discovery stage. Time is needed to realize that it exists, time is needed to find out what it does, and time is needed to find out what needs to be done.
There is only one way to combat ALS and that is for dedicated, targeted research.
This takes enormous amounts of funding. Funding that the Canadian government is sadly not willing to give, at least not yet.
2018 comes with the frustration that our government does not see the urgency for those living with this disease right now. This does not mean that there is no point in advocating and bringing awareness to ALS. We are at the beginning of the race. Sadly those that we know with ALS currently may not make it, but it is important to think to the future, ironically something that an ALS diagnosis takes away.
Government funding for anything takes a long time and needs continuous commitment from those who want it. Until then everyone that has taken the time to advocate and donate to ALS now can hold their heads up high and know that they are at the start of something big. YOU are at the start of what is going to be the cure for ALS. It is not a matter of “if” but “when”.
Click on the button below for the highlights of the 2018 budget from a CBC news article.
I have posted the announcement and response from ALS Canada, as they are always more eloquent in expressing the cause then I am.
Yesterday Finance Minister Bill Morneau tabled the 2018 federal budget. We are encouraged by the increased federal support for fundamental research and #Budget2018’s commitment to science and innovation, yet disappointed not to see any dedicated support for #ALSresearch. This has been a focus for our advocacy efforts because of its potential to get us closer to a future without ALS. We will continue to push for this tremendous need through various channels within government and will keep up our engagement with key government stakeholders on issues of importance to the ALS community.
We are hearing from so many of you about your frustration and disappointment in not seeing any dedicated funding for ALS research in the 2018 budget.
Even though we didn’t see what we had hoped for, we don’t have to stop making our voices heard.
We are continuing to meet with government to push for dedicated ALS research funding to fulfill the commitment in M-105.
You can add your voice by reaching out to your MP as well as Heath Minister Ginette Petitpas Taylor and Science Minister Kirsty Duncan to let them know #ALSresearchmatters to you, and that any funding for neuroscience research should include dedicated funding for ALS research and support for Project MinE through Genome Canada. Tag ALS Canada and use the hashtag #ALSresearchmatters.
The voices of our ALS community have power, and we can still make change happen.
Just to prove I live with a tiger!
Travis & I are back from an amazing cruise with my parents. I've put the route on the travel page and will blog about it, but right now I'm recovering at home. It takes my body at least a week to feel better after travelling, sorry if I've been incommunicado, but slowly getting back to life.
Ready for Spring now that I've had a taste of the heat!
Stay warm! xoxo
Dad spent months writing a paper on a father's perspective on having a daughter living with ALS. We would love to share it with you, click on the button below to read the online copy or feel free to download.
Join us for the 5th Annual Curling for Carol Bonspiel! Carol Skinner was diagnosed with ALS at the age of 41. You can learn more about her story and how she is using her time to advocate for others living with ALS at www.livelovelaughwithcarol.com/blog. Many people are not aware that only select pieces of equipment are funded by OHIP and even then, only partially. The average person diagnosed with ALS will spend more than $150,000 of their own money on vital equipment during their battle with ALS. That is why we come together for a great day of curling, give away prizes and draw for exciting raffles to raise much needed funds. 50% of the proceeds goes directly to ALS Canada Research Division and 50% goes toward the puchase of necessary equipment such as a wheelchair and in-home mobility aids. Curling is a great way to support those with ALS as it is one of the most accessible sports out there and a true Canadian classic. Wheelchair curling is even an olympic sport. That said, you do not need to have ever curled before to come out and have a great time. Register as a single and join a team or sign up as a team of 4.
For more information about ALS go to: https://www.als.ca/about-als/what-is-als/
What is a Bonspiel?
A bonspiel is tournament. Teams will play each other and "compete" for the top spot of the day. The curling community has always used Funspiels as a way to introduce people to the sport and raise money for charity.
What do I wear to the event?
Wear comfortable, warm clothing such as athletic or yoga pants, no jeans. Dress in layers. Half of the event time is in the rink and half takes place in the restaurant.
What equipment do I need to bring?
Bring a pair of clean indoor only/gym running shoes. If you have a slider or a shoe grip, you can use it but it is not necessary. Brooms are provided, including brooms for participants in wheelchairs.
What if I don't know how to curl?
That's ok. At Funspiels you will find that most peopel have never curled in their life and some will have curled a couple of times but would still call themselves non-curlers. You will still be able to curl even when it's your first time. You will be able to throw rocks, sweep them into the house and every once in a while do a spectacular take out!!
What if I can't find enough people to make a team?
That's ok. Several people will be in the same boat as you. We will match people together to create full teams. We will make every effort possible to match non-curlers with those who have a little experience so that everyone can fully participate and have fun doing it.
Is their food provided at the event?
Yes, there is a pizza lunch provided with your registration. There are also snacks and beverages available for purchase.
Are there ID or minimum age requirements to enter the event?
No ID or minimum age is required unless you would like to purchase alcohol at the cash bar. Children under 10 years of age will have difficulty in throwing the 40lb curling stones but are welcome to particpate in conjunction with their parents/team.
Is the event wheelchair accessible?
Yes, both the event and venue are wheelchair accessible. There is a ramp on the ice for wheelchairs and accessible brooms are available.
What are my transportation/parking options for getting to and from the event?
OC Transpo bus routes 95, 97 and 63 will take you to the Nepean Sportsplex. Consult octranspo.com for more information.
Free parking for those who drive.
How can I contact the organizer with any questions?
Contact Robin MacIntyre at email@example.com for more information.
Do I have to bring my printed ticket to the event?
We do appreciate you bringing your printed ticket to help with registration; however, if you cannot print it or forget it at home you will still be admitted as long as we have your name and information.
Is my registration fee or ticket transferrable?
Yes. It is helpful for the organizer if you can forward this information as soon as possible.
Is it ok if the name on my ticket or registration doesn't match the person who attends?
Yes, that is fine.
Curling for Carol
Organizer of 5th Annual Curling for Carol Bonspiel - ALS Fundraiser
When our coworker, Carol Skinner, was diagnosed with ALS, we knew we wanted to develop a fundraiser that would both raise funds to help offset the enormous costs that would be coming her way but to also spread awareness throughout our community. We are very pleased that 50% of the proceeds go directly to ALS Canada Research Division. When funds are earmarked for research, none of the funds are diminished by administrative costs. We are hoping that this is the year we will be able to surpass $10,000 raised by this event.
ALS research is not funded by the federal government. Funds are only generated by fundraisers across Canada. For more information on how ALS spends your money go to: https://www.als.ca/research/als-canada-approach/
1701 Woodroffe Avenue
Ottawa, ON K2G 1W2
Since my diagnosis, I have been interested in participating in clinical trials for ALS. Not for myself, I understand that 50% of the trials are placebo, and we are still a ways off for any effective treatment of ALS (though I do believe in miracles!). But I have always felt that you cannot complain about anything without being part of the solution! I actually qualified for a clinical trial in Montreal, however, it meant travelling to Montreal every two weeks and I could no longer travel on my own. The good news is that Ottawa will be getting a "Centre of Excellence" with an ALS specific neurologist who will initiate trials in Ottawa, though we have been waiting for this for 2 years now. In the meantime, I am participating in an online clinical trial with the American ALS Therapy Development Institute. Every month or so they record my voice sample of "I Owe You a Yo Yo Today", and I complete an ALS-FRS-R (Functional Rating Scale). I received a very nice thank you letter for my participation and thought I would share it with you.
This is a note to say thank you, but I confess that it feels inadequate.
At the start of the Precision Medicine Program, we asked you to share voice samples with us. We told you that if we could learn to sensitively detect changes in your voices, we might be able to sensitively measure treatments that were helping those symptoms. This would ultimately help ALS researchers and doctors find treatments that work. We had no idea how we were going to do it, but we knew we’d never figure it out without first collecting voice samples.
For months, maybe years, you’ve called into a phone line hosted by us at ALS TDI to share your voice samples. You may have wondered if anyone was even listening to the recordings. Our clinical and research teams have listened to nearly every single one.
As we’ve listened, we’ve been reminded of one of the key ideas underpinning the Precision Medicine Program: that no two ALS experiences are exactly alike. In listening, we haven’t just heard ALS symptoms in your voices, we’ve heard your diligence, your frustration, your determination, and your humor.
In the past year, we partnered with researchers at Google to learn how to use these data. We’ve shared nearly 10,000 recordings with them. The Google team uses automated machine learning algorithms to parse the data embedded in the voice recordings.
It turns out Google has some smart folks! They’ve made real progress in tracking bulbar ALS symptoms. We are so excited about where the collaboration will take us, not only because of their know-how, but because of their team’s compassion. Like us, their team has listened to the voice files personally and were touched and motivated by what they heard from you.
You’ve told us, month after month, that you owe us a yoyo. Nope. You don’t owe us anything. We owe you our gratitude and so much more. We owe you progress and results. We’ll get there together.
Fernando G. Vieira, MD
Senior Director of Preclinical Research
Co-Principal Investigator, Precision Medicine Program
ALS Therapy Development Institute
As someone living with ALS, the holidays are an emotional time. I feel so grateful to still be alive to spend time with my family, but it’s also difficult knowing that my life will never be like it once was.
I’ll always enjoy watching those I love having holiday fun. However, due to my limited mobility, I’m no longer able to help chop down the perfect tree, go shopping for presents or put up decorations around the house. ALS has changed everything for me, and for my husband, Travis.
Since I’ve been diagnosed, I haven’t worked. I use a wheelchair. I also struggle with constant fear. How will I possibly cope when my muscles deteriorate to the point that I have full-blown paralysis and can’t breathe on my own? This is what ALS does to a person’s body, and unfortunately, it’s also what my future will look like.
Right now, ALS research is extremely underfunded. It’s a devastating disease, and there is no cure. My wish this holiday season is that more funding can go to the many promising research studies underway. ALS Canada relies on donor support to back this research that could lead to new treatments.
Please find it in your heart to help everyone else across our country who is living with ALS by making a donation today. With your help as a donor this holiday season, new insights could be discovered and this disease could become treatable, and not terminal.
One thing about living with ALS is that you realize that each and every day is a privilege. To me, the New Year is another important milestone and 2018 will bring fresh possibility, opportunity and hope for a future without ALS. One of the best gifts you can make this holiday season is making a donation.
With warm wishes,
Living with ALS
This is my fourth Christmas after my ALS diagnosis. This was the one I was most afraid of. Because of course my mobility is getting more difficult by the day, and living in Ottawa, the winters can be a nightmare. When it snows, I am stuck inside. I do have my power wheelchair, though the snowbanks on either side when I'm trucking along the sidewalk are often higher than me, and when I reach the end, of course a street snowplow has come along and pushed snow against the end of the sidewalk creating a wall impossible to cross. I am waiting for someone to invent a snowplow wheelchair so I can make my own way! Due to lack of circulation, my feet often turn purple, and the cold literally shuts down my body. At Christmas, I miss my brother, I miss my Granny, I miss Nemo.
But my attitude has changed. We are headed to Newburgh to see Heather & Andy, and they are coming to visit us in December as well! It is my parents and my cousin's first Christmas in Ottawa. Travis & I are going to a Christmas Tree Farm in Pakenham to choose a tree, and he has learned his lesson about not sawing through knots! Good friends joining us Christmas Eve, and mom's Christmas apps (as in appetizers not iPhone icons) are what make me happy. So despite my initial fears, I can't help but be excited about the season. Travis maybe not so much as he has to put up with me telling him exactly in which spot to put the ornaments ("in front of the light!", "the little ones at the top!", "the polar bear beside the picture of Nemo!") and again cooking over 200 turkeys at work. Nevertheless, we know the importance of cherishing moments and appreciating what we have together. With so many friends and family to celebrate the season with, this is what I most cherish.
We wish you a happy, healthy and joyous holiday season, full of appreciation, laughter and love.
For those who are interested, check out the ALS Canada Holiday Campaign featuring Travis & I on the media page of this blog.
If there is one thing I would love for others to take away from my experiences in living with ALS it is to appreciate what you have right now and enjoy the moment! Having just lost two work colleagues whom I truly admired in 24 hours to cancer, it is a stark reminder to live your life now and don't wait to make your dreams come true.
Although I am saddened daily by the things I can no longer do (I had to open the milk with my teeth this morning), I never for a minute regret the amazing life I have lived and people I have met along the way. I try to always appreciate what I have, as opposed to grieving what I don't. For example, it's been awhile since I've been able to bend down to the floor, the positive side is that I no longer have to clean up cat vomit!
One thing that has made an incredible impact for Travis and I is the Direct Funding Program of Ontario. The program has enabled us to hire a caregiver who helps me get up and going in the morning. They help me with breakfast, showering, dressing, laundry, dishes and even my mental health. I was stubborn in the beginning, not wanting the help, of course I would rather do things myself, but the truth is I can't. I've realized how much I need it and don't know what I would do without it. What a wonderful country we live in. I'm so grateful for Canadian healthcare and the compassionate people who work in this industry.
Of course advocacy has played a huge role in my mental health. I have been connecting with some families living with ALS to try and be a support for others. If you can use even a small part of yourself to help others in this world, I promise that whatever you give, you will get back tenfold, and make the world a little bit better while you're at it.
A few weeks ago Travis & I went to go and see the leaves in Gatineau Park. We picked up Subway to have a picnic at a lookout with views, though when we arrived we discovered they had closed the roads for the season! Instead of being disappointed, we decided to keep driving to Wakefield as we had never been there. We ended up having a gorgeous French lunch at the Wakefield Mill. It pays to turn disappointment into adventure!
I've been appreciating the moment as best I can by taking advantage of sunshine, puzzling, making time to see friends, and of course playing with my cats.
If I'm having a hard time living for today, I try having something to look forward to, to keep me going. Right now, that is Travis's birthday, hopefully a weekend getaway with friends in December to welcome the holiday season, as well as upcoming travel plans that I have posted on the travel page of this blog.
If you are interested on the latest ALS research updates, check out the link below.
Sorry it has been awhile since my last post! That is not necessarily a bad thing, however, as being busy means that I am living life!
I've been stuck on that first line. As I read it, it feels real but not entirely true. The truth is that my ALS is progressing. What that means to me is that absolutely everything I do is hard. Frustratingly hard, and it is a difficult thing to live with the knowledge that it is only going to get worse. My body feels extremely heavy, and I feel a lack of motivation and clarity in my brain from feeling exhausted all the time. The truth of the matter is that I haven't written a post because I have had a hard time finding a way to write honestly, thinking that no one wants to hear the miserable side of things, but writing only the positive does not feel truthful. I am generally a positive person, and feel best about myself if I can be inspiring to others. When I feel sorry for myself I don't feel very inspiring. And I think of the ALS heroes who never seem to give up on their quest for advocacy and a cure. Travis always tells me that what we don't see is their personal struggle. Because of course they have dark days. Miserable, self-pitying, depressing days. And that is okay, because that is our reality.
But then several of you have reached out to me, a few people I don't even know who have told me that they enjoy reading my blog. So instead of not writing, I will continue to share the bad with the good. I just can't help it, I am honest to a fault.
Travis & I had an amazing time in August in the Okanagan visiting with Kate, Malcolm, Keith, Tania, Rolo & Karma! As we had a particularly wet summer in Ottawa, vacationing in Summerland was our summer. It was above 30 degrees everyday, my kind of weather, my body works so much better when it's warm! Travis's cousin Ben came for a visit, as did my cousins Debbie & Michelle. We ate peaches, saw 54-40, visited vineyards, a lavender farm and even dared to swim in Lake Okanagan with Ogopogo! The most special part was of course spending quality time with family, before my amazing niece was to leave for University to study nursing! For more you can visit the Travel & the Gallery page of this website.
Not long after we returned from Summerland, we were blessed with a visit from Heather & Andy (of course we had too much fun 'nuff said)!
Travis's parents came all the way from New Zealand to stay with us for the month of September. We had incredible weather and a great time visiting Mosaïcanada 150. Travis & his parents went on a road trip to Toronto where they saw Rodriguez and joined the Toronto walk for ALS, while I saw Jack Johnson in Ottawa. We spent great quality time together and enjoyed every moment. Check out pics from the Skinner's time in Canada on the Gallery page.
Unfortunately, I came down with a case of sinusitis which layed me flat for several weeks. When I'm sick, I have zero energy reserves, so it feels pretty miserable. Which is why I'm an advocate for the flu shot. Even if you feel that you never get the flu, you can carry the strain without symptoms and pass it on to others. For more info: www.cdc.gov/flu/about/qa/misconceptions.htm
There have been many anniversaries lately, and with that many ups and downs. September 19th was the 4th anniversary of my ALS diagnosis. Happy to still be alive, but sad as I don't want to live in paralysis. Happy I'm not there yet. Sad at what I've lost thus far. Happy that I am not alone. Sad at the loss of a future. Proud of my past.
We celebrated mom's birthday with family and finally gave her a South African Braai!
September 29th was our 8th wedding anniversary, making it 14 years together! As you are all aware, I could not do this without Travis. He is the most loving, patient, and compassionate caregiver anyone could ever hope for. But no one wants their spouse to have to be a caregiver. Travis lives with a sense of humour, an incredible work ethic and an endearing personality. As with others living with ALS, it is difficult to not feel like a burden to your person. I feel as though I no longer contribute to the household, and I cry, I cry a lot. But Travis never makes me feel like a burden. He makes me feel like his wife, and appreciates every day I stay alive for him.
October 4th was my brother Don's birthday. Taken too soon, we miss him everyday.
We celebrated Thanksgiving at Al & Jeannie's with their lovely family and again feel so grateful about the people we are surrounded by.
As our busyness slows down with the fall weather, I now have more time to spend with friends, and to plan for future travel. Though travelling has become more difficult, I'm not ready to give up on it yet!
Carol Jean Skinner (née Sharman)