JUNE IS ALS AWARENESS MONTH!

Life is too damn short. When you get an ALS diagnosis, you are told you only have 2–5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. I’m going to die from ALS, but it’s not going to take away my life. It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Days.

DAY 30
Justin Landry
“Wendy was an incredible person who handled the journey with grace and was an inspiration to us all.”

SEIZE THE 30 DAYS. LEARN MORE

Being in the moment, stopping and smelling the roses, seizing the day… they all mean the same thing and the notion is so simple. Yet it is an elusive concept. During ALS Awareness Month, we’re fiercely championing this idea, and we want you to join us:

  • SHARE! Tell your friends about these incredibly inspirational stories. Upload your own video and showcase how you seize the day! And remember to use #seizethedays4als when you spread the word.
  • DONATE! There is nothing more gratifying than lending a hand to those who need it. By making a donation you’re helping to make ALS treatable not terminal.
  • VOLUNTEER! Get in on the action and participate by joining a walk or creating your own fundraising event.
  • LIVE YOUR LIFE! Don’t waste a single minute. Appreciate the time you have and share your talents, your dreams, and your heart with the world around you. Not just for 30 days, but for all of them.

HOW WE HELP

We help Canadians live with ALS.

Managing a terminal disease is not easy. At ALS Canada, we work with Canadians affected by ALS across the province of Ontario providing services,…

We invest in research to make ALS treatable, not terminal.

The ALS Canada Research Program funds the most promising ALS research in Canada which will move the field forward to discoveries and breakthroughs as…

We use our voices to advocate for change on behalf of the ALS community.

Every year, the team at ALS Canada travels to Ottawa, speaking to members of Parliament on the hardships and reality of what it’s like…

We fundraise so we can help families and change the reality of ALS.

Currently, there are approximately 1100 Canadians living with ALS in Ontario. Each person needs supportive services and equipment to manage their journey through the…


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30 ALS STORIES

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Wendy was an incredible person who handled the journey with grace and was an inspiration to us all

Hi everybody, it’s Justin Landry, Canadian actor and son-in-law of the late Wendy Spratt who did have ALS. In 2008, Wendy came to our wedding and she had her shoe taped to her foot because she couldn’t keep her shoe on her foot. In 2009 she couldn’t dance at my brother-in-law’s wedding and before we knew it, she was in a wheel chair.

Luckily we had the support of the ALS Society of Canada, we had equipment lent to us, we had people who were able to talk with us, communicate with us to help guide us through the journey and we are especially very grateful for that.

I wanted to take this opportunity to ask you to consider to donating to the ALS Society of Canada and visit seizethe30days.ca because more money is needed for research and more money is needed for equipment.

Wendy was an incredible person who handled the journey with grace and was an inspiration to us all. She loved to travel, she loved to cook, she loved her grandchildren and her own children very much. We think about her everyday.

On your journey or if you know somebody who is on the journey, you know that they need help and we are here to help each other. So consider donating. Money is needed for research and money is also needed for equipment. I want to thank you in advance, I want to thank the doctors, nurses and scientists who are dedicating their life to this cause and even our emergency services workers who are on the front lines often dealing with this.

Wendy had to go to the hospital a couple of times and our emergency services workers came and our first responders are near and dear to us.

Life is too damn short.

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There’s no shame in preferring happiness

Life is just too damn short.

There moments like this, watching my Aunt Lynne dance with grandparents where you just want to slow the clock down and savour the absolute joy that’s happening in this moment.

We lost my Aunt Lynne on March 1st, 2105 to ALS approximately 2 years after her diagnosis.

There’s a letter I keep in frame that my Aunt Lynn wrote a month after I was born, And here’s why, it says:

“I know that a kite might seem an odd present for the new baby. But in the first place, you must have enough baby equipment. In the second place, maybe babies should get more interesting presents anyways. And finally you tell her, that when she flies that kite that she can reach for the sky too. Make sure she has enough confidence in herself, to know that she can be and do anything. But that she also knows, there’s still too many people around who are going to want to cut the strings of her kite.”

Today I want to talk about legacy. Life is too damn short, particularly when you receive an ALS diagnosis. Although my Aunt’s remarkable life was cut tragically short just over a year ago, her legacy is going to continue to live on in spite of that.

My Aunt, Dr. Lynne Chisholm was an academic. She held the prestigious UNESCO Chair at the Institute for Lifelong Learning in Hamburg up until ALS made it impossible for her work in the very short time before her death at the age of 62. Lynne was both a highly respected academic who made a significant contribution to education and youth research and influenced educational policy at a European level.

But for us her family, Lynne was so much more than that. Her closest friends quoted Albert Camus at her funeral saying: “There’s no shame in preferring happiness.” Lynne lived a happy life. Living an ocean apart, the last physical day I spent with her was on New Years Day 2013. While saying goodbye Lynne said to me: “from what you’ve been saying I know you are not happy. Do what you need to be happy. You have my support.” That’s all she wanted. And as I clawed my way back to a life I wanted over the last several years, she supported me from afar.

On March 1st, 2015 I crossed a finished line of a half marathon to learn that we lost Lynne.

When you have ALS, overtime you progressively lose the ability to talk, swallow, walk, move and eventually breathe. It was then and there I decided, if Lynne can endure that, that I can endure a full marathon to raise money to fight this horrible disease. Throughout her battle though, Lynne never lost her spirit. In one of her last emails she wrote: “Breakout the champagne, I’ve gained a gram.” As for me, I will never forget her contagious laugh.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. People are or going to die from ALS, but it’s not going to take away their life.

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I am here to tell you that life is too darn short, too darn short to dwell on the dark. Be alive, be connected, just do it. NFQ. Yes, NFQ. Never quit. The F is silent.

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Life is too darn short.

My name is Tom O’Shaughnessy. I am recently widowed with three early 20s young adults, and I have ALS.

With ALS you lose a lot. ALS (also know as Lou Gehrig’s Disease) is a progressive neuromuscular disease. Nerve cells die and leave the voluntary muscles paralyzed.

I was once an athlete, not I am a quadriplegic. I use breathing support and I am fed through a tube in my stomach.

One of the first things you learn about ALS, is there is no known cause, no know cure. Most afflicted die in 2 to 5 years. How would you feel if you were diagnosed with ALS? Probably somewhere between unsettled, disturbed and terrified. You might be angry with the future denied. Biking, sailing, running, hockey, tennis, golf, parties, gourmet cuisine and travel; your interest now and your future plans all gone.   You would think of your friends and family, and how prepared you are to die. Dark stuff. Really dark stuff.

I am here to tell you that life is too darn short, too darn short to dwell on the dark. Be alive, be connected, just do it. NFQ. Yes, NFQ. Never quit. The F is silent.

Life is too darn short. Be alive. Keep getting out there and doing things. I went to a Raptors game this winter, got out to the Halton ALS walk on the May long weekend, I will go to at least one Blue Jays game, all with family and friends. Three weeks ago I was in box seats, at a CFL preseason game. Argos versus Ticats. I was the guest of an old rediscovered friend. A couple of weekends ago on Father’s Day, my kids wheeled me down to the Burlington Sound of Music, a great festival where we took in Lighthouse, one of the great Canadian bands, an 11 piece band from the 1970s. It was a hot cloudless day and when the tune Sunny Days was played we all sang along: “Sittin’ stoned alone in my backyard. Askin’ myself why should I work so hard? Sittin’ dreamin’ ‘bout the days to come, half-undressed, just soakin’ up the sun.”

Life is too darn short. Be connected. A chance like this, knowing you are on a short fuse, comes once in a lifetime. I don’t know about you but I was working 40 to 60 hour weeks. Busy. Busy with a variety of personal and business initiatives. I was doing things. When diagnosed, I was reminded that people are way more important than things.   I needed to become more connected with family and friends. Get to know the kids better. Get to know my family better. Call up old friends. Be open to making new friends. Resolve some differences. Basically get reacquainted with humanity. I have and I am a better person for it. Being connected is good for your health. Life is too darn short. Just do it.
You need to get on with business while chasing some of your dreams. After getting over the initial terror of the ALS diagnosis my first instinct was to tidy things up. Make sure that the financial house was in order. The house paid off, the Will written, insurance all done. Not very exciting but you have 2 to 5 years to live you want to leave things tidy.

So what about the dreams? There were trips we dreamt of but hadn’t taken, so we just did it. We went on family vacations. We drove to Canada’s East Coast where we had a great time, including dining on lobsters straight out of the ocean. We flew to Ireland for an once-in-a-lifetime vacation. By then I was walking with difficulty and with a cane. So we always stayed within 800 m of the nearest great pub. The vacations with the family were long overdue and they were fantastic.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and fast. What do you do? ALS doesn’t care. It takes away mobility and functionality of your body.

Sometimes it’s slow. Sometimes it’s fast.

I’m going to die from ALS, but it’s not going to takeaway my life.

Life is too darn short. NFQ. I will never quit. By the way, Happy 21st birthday to Shannon and Nolan.

Check out my blog. Check out my blog on ALS Unlimited. The website is DifferentIsCool.com

It’s ALS Awareness Month. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Day.

 

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Seize the Day

Screen Shot 2016-06-05 at 10.42.04 AM

Being in the moment, stopping and smelling the roses, seizing the day… they all mean the same thing and the notion is so simple. Yet it is an elusive concept. During ALS Awareness Month, we’re fiercely championing this idea, and we want you to join us:

  • SHARE! Tell your friends about these incredibly inspirational stories. Upload your own video and showcase how you seize the day! And remember to use #seizethedays4als when you spread the word.
  • DONATE! There is nothing more gratifying than lending a hand to those who need it. By making a donation you’re helping to make ALS treatable not terminal.
  • VOLUNTEER! Get in on the action and participate by joining an upcoming walk or creating your own fundraising event.
  • LIVE YOUR LIFE! Don’t waste a single minute. Appreciate the time you have and share your talents, your dreams, and your heart with the world around you. Not just for 30 days, but for all of them.

Life is too damn short. When you get an ALS diagnosis, you are told you only have 2–5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. I’m going to die from ALS, but it’s not going to take away my life. It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the

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No more waiting. No more wondering. One event restored her sense of joy and gave her a purpose to go on living with profound hope.

Bucket Fun-Raiser 16 - 63 of 107

 

Life is too damn short!

…especially when you receive a diagnosis of ALS.

It took three years and several medical teams to rule all else out. Then the day came. November, 2015. I had officially joined the ALS ‘club’.

The next step for me was to pack it in as soon as possible. No more waiting. No more wondering. A solid understanding of what was to come, and dreading what affect it would have on those who are close enough to care. I had made up my mind that death should come as soon as possible.

About a month went by and I decided to tell a handful of my closest BFFs and immediate family. I didn’t want to tell anyone else. Not only was it exhausting, but most likely because admitting it to others meant it was true.

I finally got the courage up to tell an old friend. And she told another old friend. And then that other old friend called me to say, ‘Hey I have an idea…’. He reminded me of the many wonderful friends I had who cared, though may not have seen for years. He reminded me of the strong sense of community we shared and that regardless of how time had passed, the community is always present, ready to support.

He wanted to throw me a Bucket List Party. All I had to do was dream up a bucket list, not an easy task when you’re ready to lie down and die. That ten-minute chat restored my sense of joy in life, gave me a purpose to go on living and profound hope.

This community put on a celebration like no other. Friends arrived from all corners of North America and sent supportive and loving messages from abroad.  There was a live band, from within our community who rocked the night, and a photo montage from the 30+ years we had all known each other.

Never in my wildest dreams could I have imagined such a strong sense of community, coming together with an overabundance of love and support.

When you get an ALS diagnosis you are told you have 2 to 5 years at most. Your clock is ticking and it’s ticking fast. What do you do?

You seize the day! You take hold of what’s left and you live it to the fullest. Live. Love. And then do it again and again. It’s too precious to give up and give in.

Seize the 30 days! Because with ALS, the disease doesn’t care. It takes away your mobility and functionality of your body. Sometimes it’s slow, sometimes it’s fast. People are going to die from ALS but it’s not going to take away their life. It’s ALS awareness month. You’ve got 30 days. Take a video. Post your story or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it – seize the day!

FunRaiserMay7

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We joined the ALS Committee in Scarborough so we do whatever we can to help

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Life is too Damn Short. 8 years ago our families life was turned upside when my brother in law John was diagnosed with ALS. John fought for a long 8 years and passed away in September.
As a family we all banned together to help in any way we could. Whether it is was helping out with my Niece or with taking care of John or even joining the walk and raising money everyone tried in their own way. John lived in the USA and my immediate family were unable to go down there to help out a lot or join the walks so we joined the ALS committee here in Scarborough so we could feel like we were helping out as well.
My oldest daughter Madison was very close to her  Uncle John and would visit often and participate and raise money for the Hershey Pennsylvania walk. Madison wanted to do more to help raise awareness and money for ALS that she was very eager to join the committee and head up the children’s corner for the Scarborough walk.
The last nine months have been extremely difficult for for our entire family but especially hard on John’s wife Debbie and his daughter Julia. We can all only work hard to help find a cure and raise awareness for this horrible disease that is taking so money lives.
When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. I’m (People are ) going to die from ALS, but it’s not going to takeaway my (their) life.  It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Days.
Tara, Rob, Madison & Paige

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Diagnosed in 2013 Carol seizes every day and shares it on her inspirational blog

LIveLoveLaughWithCarol

On September 19, 2013, Carol Skinner was diagnosed with ALS. Together with her husband, Travis, she created a website designed to, as she states it, “stay in touch with friends and family, to update everyone on my status, and to include loved ones in our journey”.

The message on her site is both focused and inspirational. She describes the deep love and affection her and her husband share, she showcases the exhuberance they feel when traveling the world, and she writes engagingly about her life and the importance of seizing the day. The photo gallery on the site is a wonderful illustration of her life experiences.

Carol has received honours and plenty of media coverage for the important work she does in support of ALS Awareness. Check out her blog  and seize a few moments to hear her story.

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Today we are remembering a champion

Life is too Damn Short.

As the VP of Research at ALS Canada I have also had the opportunity to participate in our Federal Advocacy Initiatives, in which I got to work with a dedicated ALS Champion, Brian Parsons, who passed away this month.

This week’s Ice Bucket Challenge Throwback Thursday salutes you, Brian. Brian was always one to seize an opportunity and he quickly became friends with Pat Quinn, one of the early adopters of the IBC.

Watch the video he did with Pat Quinn last year and you will see how he believed in using his “voice” to advocate for change. Brian had Bulbar ALS. He may have lost his ability to speak, but he never lost his voice. I am fully convinced that Brian was the centrepiece of the change in the Compassionate Care Benefit change which was extended from 6 weeks to 6 months. He refused to take no for an answer and took us from short glad-handing sessions with whatever MP would listen to having the full attention of the most important people in government. If a meeting was considered finished and we didn’t get anything sufficient, Brian didn’t leave, he remained politely seated and seized the moment where we had the ear of someone influential who did not yet realize that they were going to help us. If we were told that someone had a tough personality or wasn’t particularly warm hearted, Brian seized the opportunity to put them in tears. Some mornings on the Hill when you could tell Brian wasn’t feeling optimal, he did not let that stop him from showing up and kicking the darkness until it bled daylight. Brian truly lived his motto of “Carpe diem” in all aspects of his life. He was a man who could cry without weeping, talk without speaking and scream without raising his voice. He taught me so much that I will hold dear both personally and professionally, and I am extremely grateful to have been briefly mentored by a Master of “Seize the day”.

Brian had 3 years living with ALS. He knew his clock was tickin’ and tickin’ fast. What did he do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. Brian died from ALS, but it’s not going to take away his life.

 

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It was my father's tragic diagnosis that gave my life purpose. I found an outlet...a passion... I used my energy to do as much good as possible, raising awareness at every opportunity

FB_IMG_1465306022329Life is too damn short…

Hello my name is Jacquelyn and I am the proud daughter of Paul Devine. As a Personal Support Worker (PSW) for 3 years prior to his diagnosis, I was aware of what was in store for my family and I, but I wasn’t prepared.

It did not prepare me for the long drives ahead, the sleepless nights, the emotional pain, the heartbreak the anxiety or what it would be like living as a daughter of someone with ALS. This disease does not care how old you are, who you are, what your past looked like, and it certainly doesn’t care about your future. My dad was diagnosed at the age of 59, and died at the young age of 61. When a family member has ALS, the family has ALS as well. We watched him lose his ability to eat, speak, and eventually breathe. We felt hopeless, BUT he felt alive. He never took life for granted and there was no way he would start now. He danced, he laughed, he smiled, he joked, and he simply lived. He continued to do all the things he loved to do as long as he could; he golfed, he partied, he attended concerts, and listened to his favourite tunes. He spent time with his family and even had his last trip with my sister out to Calgary where he visited places he hadn’t seen since he was a young man.

He lived and he loved living. He was a reminder that every day is precious and each day should be lived to the fullest, the greatest lesson my dad could have taught me…

It was his tragic diagnosis that gave my life purpose. I found an outlet…a passion… I used my energy to do as much good as possible, raising awareness at every opportunity: from creating jewelry, to volunteering at numerous events, and eventually becoming an ALS ambassador; a role I take seriously and carry with pride.

When you get an ALS diagnosis you are told you have 2 to 5 years at most. Your clock is ticking and it’s ticking fast. What do you do?

Because with ALS, the disease doesn’t care. It takes away your mobility and functionality of your body. Sometimes it’s slow, sometimes it’s fast. People are going to die from ALS but it’s not going to take away their life. It’s ALS awareness month. You’ve got 30 days. Take a video. Post your story or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it seize the day!

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Carol Birks Talks About Global ALS Awareness Day

Life is too damn short.

My name is Carol Birks, and I am the Chairwoman of the International Alliance of ALS/MND Associations.

Today Global ALS/MND Awareness Day is a solstice – a turning point. And each year the International ALS/MND community, undertake a range of activities to express their hope for treatment to stop this devastating disease.

ALS/MND strikes indiscriminately effecting over 400,000 people worldwide. I’ve been working for MND Associations in Australia for over 16 years now and each day the courage, positive spirit and determination of people living with ALS/MND moves and motivates me to seize the day on their behalf.

There have been many advances during that time to improve care and support. But unfortunately effective treatments remain elusive. However I believe, we are now at a turning point. Since the Ice Bucket Challenge in 2014 there has been a marked acceleration in research, increased awareness and increased government and community engagement globally.

Today and everyday, the international ALS/MND community will work together, without borders, to keep the momentum going because life is too damn short for too many people diagnosed with ALS/MND

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I promised my mom that I would continue fighting, helping and supporting the search for a treatment to make ALS a treatable and not terminal.

Life is too damn short.

My name is Tara and I have the privilege of being an ambassador for ALS Canada as well as one of the coordinators for the Barrie Walk for ALS.

My family’s story with ALS began when my mother Wendy at 65 years old, began having problems with her hands and her arms. Loosing strength with her grip, dropping things and sporadically not being able to raise her arms.

When we were ultimately given the diagnosis of ALS, it was like the earth instantly stop revolving. How can this be happening? How can this strong healthy woman have ALS? How can I be losing my mom? I froze.

My parents on the other hand did the exact opposite. They became immediately mobile. It became their mission to learn everything they could: about what was happening, what can be done, and what the future was rapidly bringing them.

Life instantly changed. From planning a few years in advance, to planning for next week. Trying to figure out where and when next years fishing or hunting trip was going to be, was replaced with trying to figure out how to allow my mom to still go fishing that weekend.

In a span of just under three years, I watched my mom’s body slowly betray her. She once described it to me like she was being buried alive, one shovel at a time.

As her body failed however, I came to realize that this woman who’s always the strongest most determined person I’ve ever known, had only become more so.

My entire family focused on living everyday, some of them good, some of them very difficult, but living each day to its fullest and laughing and loving with everything we had.

My mother’s journey with ALS ended on February 28, 2015, but her battle continues with me. One of the last things she said to me was to make me promise that I would never give up. That I would continue fighting, helping and supporting the search for a treatment to make ALS a treatable and not terminal.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body.

Sometimes it’s slow. Sometimes it’s fast.

People are going to die from ALS, but it’s not going to stop them from living their life.

June is ALS Awareness Month. You’ve got 30 Days. Make a video, tell your story, help support somebody. Do it now. Seize the Day

 

 

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This Father's Day, what a better day than today to share how my father was going to make the best of his days living with ALS

 

Happy Father’s Day, what better day than today to share my family’s story about living with ALS.

In 2013 my father became having some problems with his speech, he was slurring, finding it difficult to get the words out, which caused him to be quite self-conscience about being out in public.

Unfortunately after months of testing he was diagnosed with ALS. February 20, 2013 became day 1 for us.

Only four days later he was at my son’s hockey game cheering louder than ever, not caring how he sounded, or what people thought because he was going to make the best of his days living with ALS. That night he posted a picture of him and his grandson on a Facebook page and the response was overwhelming from his friends and colleagues.

Day 41. We drove all the way to Florida as a family and surprised him as he was getting out of his car at his condo. We had a two-week vacation with the whole family, the first we’ve been able to have in all these years. We had the best vacation that he ever had.

Day 51. It was just something really simple, like having drinks on the beach.

Day 183. We held the first Golf Fore ALS golf tournament in his honour that day. That was the last day that he and I ever golfed together. It was his last day of golf, the last day that he ever drove, and it’s a day our family would never forget.

Day 305. Many of us remember December 21, 2013 was the first day of the big Ontario ice storm. We are so glad that a 150 of his friends braved through the ice storm to fill a restaurant where we celebrated his 75th birthday. Although he couldn’t speak or communicate, he could laugh, and that’s what he did all day long and I am grateful for all those people.

On Day 370. My dad lost his battle with ALS.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. My dad died from ALS, but we did everything we could to make sure it didn’t take away his life.

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Days.

And to those celebrating Father’s Day with their fathers, Happy Father’s Day and for the sons who are now fathers, Happy Father’s Days. Seize The Days.

 

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Team Zahra Will Never Give Up!

13325660_10206436410733496_6369881308653004179_nChuck and Susan

Life is Too Damn Short

Our lives were turned upside down March 2016 when Charles was diagnosed with ALS. We have been given the opportunity to live our lives to the fullest everyday since then. We thought every thing was going as planned for our future until the diagnoses.

We have experienced every emotion going. But Charles keeps telling me “I’m not going anywhere” I love him so much. He is so determined to fight the fight and beat ALS! We are spreading the word about ALS, so that everyone understands what ALS is.

We will be participating in the WALK for ALS on June 18th with Team Zahra’s Never Give Up! We need to find a cure and beat ALS. Our fight against ALS and raising money will not stop with just the walk.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because withALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. I’m (People are ) going to die from ALS, but it’s not going to takeaway my (their) life.

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Days

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I choose to live my life on my terms. I choose to seize the day.

My name is Ron Myles.

Life is too damn short.

I was diagnosed with ALS in February 2015. This was devastating to me, and my family. Life is about choices. Living with ALS, we have no choice in our physical future. But I choose to look at the positive things in my future.

My son-in law has built a deck in the back so I can enjoy the summer sun and watch the grandchildren play with their friends.

I choose to spread the word about ALS through Facebook, Twitter, Instagram and by speaking with individuals and organizations. I choose to enjoy one more summer at my trailer. I chose to be happy and spread positive thoughts to everyone I meet. I choose to live my life on my terms. I choose to seize the day.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because ALS doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. I’m going to die from ALS, but it’s not going to take my life away.

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word.  Do it for someone with ALS, do it for someone love or someone you’ve lost. Do it for you. This is it! Seize the Day #Seizethedays4ALS

Thank you.

 

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This week's IBC Throwback video is a compilation of Ice Bucket dumps ranging from individuals to entire lab teams who seized the days in August 2014 from coast to coast!

Last week we celebrated celebrities doing the Ice Bucket Challenge. Within the Canadian ALS Community we celebrate all those who participate and included in the list are our dedicated researchers across the country.

This week`s IBC Throwback video is a compilation of Ice Bucket dumps ranging from individuals to entire lab teams who seized the days in August 2014 from coast to coast!

Our Canadian researchers are working tirelessly towards figuring out what might extend life through treatments for ALS as well as looking at ways to better manage the disease once diagnosis has been made.

Life is Short! But they are aiming to make it longer by working to understand why our genetics and the components in our cells are combining to cause dysfunction that leads to the disease. Over the past several years, this work has led to breakthroughs that will hopefully identify new drugs to slow down ALS.

For the ALS Community, it is the research that brings them hope. Your continued donations and the donations made through the Ice Bucket Challenge are helping an otherwise underfunded disease to gain momentum in innovative approaches to solving the puzzle of ALS.

To learn more about the recipients from the first round of competitions for the $21.5 million allocated to research ($20 million in partnership with Brain Canada) see https://www.als.ca/en/research-projects-funded. Enjoy this week`s chilling video!

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Patricia wasn’t the type to drown in despair. She decided that she would do all within her power to get the most from her remaining days.

PatriciaVanLoan(Manotick,Ont.)

Life is too damn short

Everyone stumbles sometimes, when they walk down the street. You shake it off as clumsiness and carry on. But for my wife, Patricia and myself, it wasn’t such an innocent occasion. We had feared — rightly so — that she was showing the signs of ALS. After all, her mother and three sisters had succumbed to the effects of this horrific neurodegenerative disease. When the diagnosis was confirmed, Patricia was relieved that she could put a name to what was happening to her, yet was overcome with fear, dread and panic. She wrote down her thoughts: “For days it literally took my breath away. Being diagnosed with ALS, especially when you have full understanding of and intimate family experience with the disease, is like waking up in the middle of your worst nightmare and discovering that it is reality. In ways I never could imagine, ALS laid me bare. I really didn’t know how I could live with ALS without going mad.” But we did – we lived – because we knew from first hand experience that life is short with ALS. With ALS Canada’s equipment loan program, we received equipment to keep her mobile, transport her up and down the stairs, and enable her to shower, bathe and get out of bed, and seize her last days. Patricia however wasn’t the type to drown in despair. She soon decided that she would do all within her power to get the most from her remaining days.

We travelled extensively; two fantastic transcontinental ventures, each of about one month duration, and several wonderful excursions to closer venues like New England and the Charlebois region of Quebec. Earlier in life, Patricia had enjoyed dabbling in painting with watercolours but the pressures of work and family life had eclipsed that pursuit. Fortunately, the progression of ALS had largely spared her upper body and she was able to rediscover her joy and to elevate her skill considerably throughout the seven years that she journeyed with ALS. I am now surrounded in my home with beautiful, watercolour renditions. From her professional life in health services, she knew that there was a deep need within that community to raise awareness, not only of ALS but also of the impact of a terminal diagnosis on quality of life issues. She launched us on a program of presentations on these aspects to health care professionals, to the Palliative Care Rounds in Ottawa, to medical students at Ottawa University and to groups such as Occupational Therapists and Personal Care Attendants who were involved in support of people afflicted with ALS. And through all of this, she derived the greatest joy of being a new grandmother, first of Mitchell and, about two years later, of Holly.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. People are going to die from ALS, but it’s not going to takeaway their life. It’s ALS Awareness Month. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Days.

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ALS has stolen laughs, happy moments, reunions and memories from my family members leaving Emma to wonder if she will be affected by the familial ALS gene

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Life is too damn short

Life is too damn short for me to live my life wondering. Wondering if I too, will be affected by the familial ALS gene that runs in my family. Wondering if my brother, my father, aunt or uncles, cousins or others will be struck by this horrible disease next. My family has lost 5 people to ALS, most recently in October 2015. Each new diagnosis is an agonizing reminder of how short our lives are, and the frustration that comes with not being able to help, cure or treat the family members that are so dear to me, who I love so much.

So what do we do? We live our lives, we have great experiences, and our family is there for each other with each unfortunate diagnosis. ALS has stolen laughs, happy moments, reunions and memories from my family members. I’ve had to watch them suffer, lose mobility, lose the ability to eat, and breathe and move, but life is too damn short. Instead we remember their positive personalities, and the memories we’ve had with each of them.

We need to keep pushing through for better research, more fundraising, and keeping the positive momentum that this community captures. Life is too damn short to worry about who will be diagnosed next, when our family will be overcome with more sadness. Instead we look to ALS Canada for support and positivity when ALS comes into our lives.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. People are going to die from ALS, but it’s not going to take away their life.

 

 

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Komal Shellikeri appreciates the small things in life.

Life is too damn short. And so I just smile every day, just to see my daughter smiling with me.

ALS has changed my entire view on life; I’ve learned has to ask for help. And there are so many people around who are so eager to offer their help.

I’ve seen more goodness and friendliness around me.

ALS has made me be a very patient person and appreciative of the small things in life. I smile when I am able to eat the food my daughter has cooked for me. I smile when my husband takes me for a walk in the woods. Frankly I am just happy to see another summer come along.

I am glad ALS has not robbed me of my mind. And I am still able to make my own decisions.

It’s been six years now, but I can still kick a leg. Let’s keep our hopes up and the funds growing to help find a cure.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. The clock is tickin’ and it’s tickin’ fast. What do you do? ALS, the disease doesn’t care. It takes away mobility and you’re functionality.

Sometimes it’s slow. Sometimes it’s fast.

I’m going to die from ALS, but it’s not going to takeaway my life.

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or just do it for yourself. This is it! Seize the Days

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Stories of the people and their families living with ALS motivates Dr. Derrick Gibbings

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Research can often be a frustrating endeavor.

When we try to understand the molecular processes that cause a disease like ALS the metaphor of trying to navigate through an unknown and completely black building is particularly apt.

We use advanced tools to “feel out” the molecular environment of the disease and try to understand what is happening and why. There are many false turns and bumps into walls before we can make a true advance in understanding a disease like ALS. This is both a frustrating and exciting process as we advance toward findings that could be used to treat the disease.

Personally, being involved with the ALS Society events in Ottawa and at the annual meeting has been a motivating force. The stories of the people and their families living with this disease which strikes unexpectedly in the prime of life rarely fail to bring tears to my eyes.

I would like to thank these people for having the courage to share their stories. I return to my work with a renewed sense of urgency for our research team to speed up our progress and focus our efforts on aspects of the disease with the best potential to provide hope for the patients of tomorrow.

To learn more about grants related to Dr. Derrick Gibbings visit:  http://www.als.ca/en/2015-als-canada-postdoctoral-fellowship-dr-matteo-da-ros

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Join us in Ottawa, Kitchener/Waterloo, Barrie, North Grey Bruce & Timmins for our annual WALK for ALS

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The WALK for ALS is the largest volunteer led fundraiser for ALS across the country. The WALK for ALS is about local communities coming together to raise funds and celebrate hope for a future without ALS.

Funds received support our vision: supporting Canadians living with ALS and investing in research to make ALS a treatable, not terminal disease.

Your donations help in two very critical ways: 

40% RESEARCH

Forty percent of proceeds support ongoing ALS research across the country through the ALS Society of Canada’s National Research Program.

60% CLIENT SERVICES

Sixty percent of proceeds support direct services for people with ALS and their families – educational information, referrals to local health care and community services, equipment assistance, home visits, and coordination of peer support groups – through your provincial ALS Society.

Help us reach our nationwide goal of $4,000,000 by joining one of our walks across the province.

Visit www.WalkForALS.ca to find a walk in your community.

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The day that Anne Marie's husband was diagnosed with ALS, they made a decision. They were going to make the best of every day.

Life is too damn short, and I sure know what that means.

Hi, I’m Anne Marie Gianetti. My husband Luigi battled ALS for 4 years. In fact, on the day he was diagnosed we made a decision; we were going to make the best of every day.

So, we took that trip with our children to Italy. We danced at their weddings. We vacationed with friends. We did all the things that we never had time to do.

And it was soon that I became the primary caregiver for my Luigi. I was not alone, I was never alone, but I was scared. Ohh was I scared. But I got help. I had help from ALS Canada, I got help from doctors, nurses, health care professionals and CCAC among a few, and especially from my family and friends.

I had to learn all kinds of new things. I had to learn about how to operate breathing machines, how to operate feeding tubes, how to operate different kinds of equipment as the disease progressed.

I also had to know about how things changed. As the disease progressed, I learned I had to adjust, I had to constantly think about the future. What was it that I was going to need, how was I going to adjust things to make him comfortable. And that’s the thing about ALS, you never really know, but you try.

So, one of things that we found what was so important was communication. Communication in the form of an email, telephone call, card, a text, food. All these things were so important to the wellbeing of my husband. We made every effort to include him in the conversation. To ask him his advice. He might not had a voice, but we found ways to communicate. It’s important.

He still was the same person, but he had a disease. My Luigi set goals; He wanted to celebrate our 45th wedding anniversary, our 40th wedding anniversary. He wanted to celebrate 60 years in Canada. He wanted to see grandchildren. And he did. He achieved all of it.

You can too. You need to set goals. It’s important. You need to seize the opportunity.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body.

Sometimes it’s slow. Sometimes it’s fast.

People are going to die from ALS, but it’s not going to takeaway their life.

June is ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love or someone you lost, or do it for you.

This is it! Seize the Days. Thank you

 

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2-Year anniversary of the ALS Ice Bucket Challenge

This August will mark the two-year anniversary of the ALS Ice Bucket Challenge.

We all remember the late summer of 2014 when ALS Awareness took over the media once ice cube at a time! During June Awareness Month we celebrate the ALS Ice Bucket Challenge with Throwback Thursdays.

Day 9 of Seize the 30 Days features Russell Martin who at the time was on the Pittsburg Pirates and now plays back catcher for the Toronto Blue Jays.

At the beginning of this community based viral campaign, celebrities, especially sports figures were integral in spreading awareness and garnering excitement for the Challenge.  As a result of the overwhelming urge for Canadians to seize the day by throwing a bucket of ice water over their heads, $17 million was donated to the ALS Societies across Canada. From these donations $11.5 million was allocated to ALS research and $4.4 million to help people living with ALS across the country. Additionally Brain Canada responded to the generosity of Canadians by matching $10 million from the ALS Ice Bucket Challenge funds.

ALS Canada is in the process of executing Year 3 of active competitions for grants, awards and research support.

To see more of the Brain Canada awards received from last year’s funding pool check out https://www.als.ca/en/research-projects-funded.

In addition, investments are underway for improvements to equipment and services, which will provide support for people living with ALS and their families throughout Canada. Look for more IBC Throwbacks features next week!

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The biggest lesson that ALS taught me was to live in the moment and live for today because you never know what tomorrow holds.

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Life is too damn short.

My name is Kinga and when I was 21 years old my mom Erika was diagnosed with ALS at the young age of 42. Four years later she passed away. Throughout this 4 year journey I was her full time caregiver, full time University student, part time worker & part time ALS Fundraiser. The biggest lesson that ALS taught me was to live in the moment and live for today because you never know what tomorrow holds.

ALS also taught me to face my fears and do all things I’ve always wanted to do but do them now because tomorrow is never promised. From skydiving to plunging into the freezing Atlantic Ocean, to bike riding hundreds of kilometres, to creating my own soccer tournament ALS Cup For A Cure and running it for 5 years, to participating in the Walk for ALS events and lots of other events, there’s nothing I wouldn’t to raise funds and awareness for ALS.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. People are or going to die from ALS, but it’s not going to take away their life.

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word.  Do it for someone with ALS, someone you love, someone you lost or do it for you.

This is it! Seize the Day #Seizethedays4ALS

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Vito's Mother show's him every day what it means to have courage

Life is too damn short.

My name is Vito.

My mother Lucy was diagnosis with ALS in October 2011. That was a scary time. Scary because we were unaware. Because the thought of loosing someone you love. And feeling helpless because you couldn’t make things better. Over the years I’ve come to realize that although ALS may ultimately decide your fate, what it can’t do is to tell you how to live.

My mother shows me everyday what is means to have courage. To love and care for someone else. She manages to smile everyday, and looks forward to what life brings her today, each and every day.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body.

Sometimes it’s slow. Sometimes it’s fast.

People are going to die from ALS, but it’s not going to takeaway their life.

 

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love or someone you lost, or do it for you. This is it! Seize the Days

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Let's roll over ALS together

Life is too damn short.

Let’s roll out ALS together.

My name is Eddy, I was diagnosed with ALS on April, 1992. At the age of 22. Over the years I learned that it is easier to smile, than to be ticked off at my fate! I just live my life to be happy, I don’t know what I do, I just live! I believe living with an expiry does that to someone. Live with no regrets, Live as if tomorrow will not come for you. But live respectful.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body.

Sometimes it’s slow. Sometimes it’s fast.

I’m going to die from ALS, but it’s not going to takeaway my life.

It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word. Do it for  someone with ALS, someone you love, someone you lost or do it for you.

This is it! Seize the Days

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We are striving to make ALS a treatable disease

Dr. Martin Duennwald

Life is short and ALS cuts it even shorter.

My name is Martin and my research team and I seek to understand how damaged proteins kill nerve cells and thus lead to the detrimental symptoms of ALS. As a basic scientist, I am driven by the firm conviction that understanding basic mechanisms underlying ALS will allow us to find therapeutics that delay, halt, or prevent ALS and thus buy as much time as possible for ALS patients.

It is a genuine privilege to work with the ALS community and to dedicate our ideas, our passion, and much of our time to making ALS a treatable disease and we work tirelessly towards this goal.

ALS research requires the use of expensive equipment and reagents – so let us do our best to raise money for ALS research during ALS Awareness Month 2016!

Follow us on twitter at @ALSCanResearch and to find out more about our research visist http://www.als.ca/en/2015-als-canada-brain-canada-discovery-grant-dr-martin-duennwald

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Debbie Damario, WALK for ALS Volunteer is Seizing The Day

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Life is too damn short! I am here seizing the early morning in preparation with other volunteers at the Niagara WALK for ALS. We are here on behalf of our friends and family who are living with or have died from this devastating disease. I dedicate my time to the WALK for ALS and other fundraising events to help raise awareness and donations for ALS Canada on behalf of Mark, my partner who lost his life to ALS. Our time together was short, but I want you to know, that like so many others, Mark was more than the disease he had and he seized every moment with and for the ones he loved (including his two cats and our dog!) He loved his family and we spent as much time with them as possible. He was spontaneous and romantic – finding occasions to bring me roses any time he could, and he would. He enjoyed sports, especially the Maple Leafs and was such a fan that he decorated our bedroom in a Leaf’s theme. He seized the days by riding his bike as often and for as long as he could. After he died, I bought him a cat to celebrate his 50thbirthday. She is Mark’s cat, and even though he is physically no longer with us, a piece of him lives in her. When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. People are going to die from ALS, but it’s not going to takeaway their life.  It’s ALS Awareness Month. Take a video, post your story, or spread the word. Do it for someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Days.

–          Debbie Damario, WALK for ALS Volunteer

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Taking it to the edge for ALS!

 

 

“I’ve never done something so extreme” says Sanjana Shellikerri, researcher with ALS Canada, as she readies herself for the Edge Walk, high atop the CN Tower in Toronto.

So why is she pushing herself to seize the day this way?

“My mother was diagnosed with ALS six years ago,” she explains, “and people like her cannot do this. They’re robbed of the opportunity to be spontaneous… to ride a roller coaster…to go to the cottage… but I can”.

Director of Research, Dr. David Taylor, echoes Sanjana’s sentiments as they both prepare to suit up, ride the elevator to the dizzying 356 meter platform and step out into the bright June day perched between the cloudless blue sky and the shimmering city below.

And he brings words of optimism as well. “I’m really excited, because now I believe we have the tools to make this a treatable disease. What we need are more resources, and if we work together, we’re going to make it happen.”

A short time later they are both harnessed up – they say they are grateful that there is a full half hour of instruction and testing of their safety equipment – and head into the elevator in bright orange Edge Walk jumpsuits. They offer a nervous wave and head skyward.

Up on the 1.5 metre-wide platform, David volunteers to go first and bravely pushes his toes to the edge. Not to be outdone, Sanjana quickly steps forward as well, leaning out over the sprawling city and yelling “Hello Toronto! Seize the day!”

It is a perfect June day, and the sun warms their faces, but the wind makes the treacherous walk even more of a challenge. The view is nothing short of spectacular. Lake Ontario to the south sparkles, sailboats mere white dots cruising near the shoreline. To the east and north, impressive financial towers and endless condos reach skyward and seem somehow within arms reach. To the west (but more or less straight down) Rogers Centre is being readied for the Blue Jays and Yankees.

Sanjana and David are rigged up to a bar that encircles the tower, allowing them to move freely around the entire structure.

There are nervous giggles as they continue around the platform, living in the moment. Each and every step – at first tentative – is now becoming bolder and more confident.

The walk lasts half an hour and it passes quickly; 30 minutes out of 30 chances to seize the days this month.

Back on the ground, their pre-walk nervousness has switched to the euphoria of doing something outside the comfort zone… the joy of truly seizing the day.

“It was super windy,” says Sanjana “it was terrifying, it was exhilarating. And the whole purpose is to gain awareness so please share these videos!”

Dr. Taylor adds, “It was AWESOME! Every time I got nervous I was thinking about what I was doing this for. ALS Canada is committed to helping people manage the journey of ALS; through client services, through very much needed equipment… we’re very much committed to making this a treatable disease. So take your videos, post your stories and please spread the word!”

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Vincent Quinn

Life is too damn short.

Hello my Vincent Quinn. Working in the in the health care field for 30 years, one of the topics of conversation that comes up is…what is the worst diagnosis? Going blind? Going deaf? Loosing a limb, an arm, or a leg? Cancer? Dialysis, or a stroke?

ALS is one that comes up all the time. Usually following by a “blow my brains out”.  We are, after all the poster child for physician-assisted death.

In August 2014, I got to find out what I would do when I was diagnosis with ALS. The first few days are a mess, BUT, after that I thought what has changed.

I can still walk, my hands work. I’m still me. I have a rather dark cloud hanging over me, but as far as today goes I have limited impairments. Today is good. So I keep doing what I do. I had to stop working, this give me more time with family and friends …when I am not sleeping.

I’ve decided also that I will fight this disease anyway I can. I have become an ambassador for ALS Canada to spread the word and joined the board of directors to be the voice of the patient.

When you get an ALS diagnosis, you are told you only have 2-5 years at the most. Your clock is tickin’ and it’s tickin’ fast. What do you do? Because with ALS, the disease doesn’t care. It takes away mobility and functionality of your body. Sometimes it’s slow. Sometimes it’s fast. I’m going to die of ALS, but it’s not going to takeaway my life.   It’s ALS Awareness Month. You’ve got 30 Days. Take a video, post your story, or spread the word.  Do it for  someone with ALS, someone you love, someone you lost or do it for you. This is it! Seize the Day #Seizethedays4ALS

 

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Tammy Moore

Hi, I’m Tammy Moore, the CEO of the ALS Society of Canada, and I’m here today to talk to you about June ALS Awareness Month.

When we first started to think about Awareness Month, what we thought about was what 30 days means to somebody living with ALS facing a diagnosis of 2-5 years to live.

We wanted to find a way that we can acknowledge each and everyone one of those days. We wanted to find a way to seize the day.

I had many great adventures with my cousin Doug, who unfortunately died from ALS at the age of 50 in 2013. What Doug taught me beyond the great adventures that we had was that each and every day is so very precious and for the 3,000 Canadians who are currently living with ALS, and for their families, and their friends they know this all too well.

There will be 1,000 new families that will be diagnosed with ALS in the coming year. Of those 1,000 people, our population will remain stable because 1,000 people will unfortunately also die from ALS.

When people are given a diagnosis of 2-5 years to live, what they are facing is loosing their ability to move their hands, to have their independence, their legs, they will loose their ability to be able to swallow, to eat, and eventually to be able to speak and to breathe.

At ALS Canada, we have a responsibility, similar to that of our provincial partners across the country. We’re directly responsible for the 1,000 people living in Ontario with ALS. Our regional managers are in their homes helping them to understand what it is they are going to be facing.   Get access to resources and educational materials. We also are able to provide equipment, things like hospital beds, and wheelchairs and ramps and lifts, aids that allow people to continue to live in their homes as much as they possible can. We also provide communication devices so that they can continue to access the outside world.

And of course we provide research. So ALS Canada we responsible for a national research program. We have a vision by 2024, to make ALS a treatable, not a terminal disease. And then we advocate on behalf of people living with ALS within government to be able to have better access to resources. To in some ways minimize the challenges that they are facing.

So for June, ALS Awareness Month, what we want you to do just as we were challenged by Brian Parsons, one of the wonderful advocates within our community, we want you to seize the day. We want you to do something fun, we want you to do something outrageous, we want you to just acknowledge what it is to have this very special day that’s before you.   And we want you to definitely post it on Facebook, to make sure you hashtag on twitter under #SeizeTheDays4ALS. We want you to make sure you’re visiting our website ALS.ca/SeizeThe30Days because each and every day in the month of June, you are going to see people from our community that are sharing their stories of how they’ve taken the opportunity to seize the day.

Why do we need to do this? Because when you’re faced a diagnosis of ALS you know that life is too damn short. The opportunity to seize the day is so very precious. So please do just that for June ALS Awareness Month. Go out there, seize the day.

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