I'm proud to call Eddy K "Let's Roll" Lefrançois my friend.

After living over 26, yes you heard that right, 26 years with ALS, Eddy passed away yesterday from ALS after having complications with pneumonia.

Eddy was diagnosed at 21 years old.  He was a formidable figure in the ALS world, tirelessly advocating for people like me.  He was an ALS Canada Ambassador and an inspiration.

I first heard of Eddy upon my own diagnosis.  My neurologist told me that he knew someone living with ALS for 19 years, I suppose to instill hope, however, that thought terrified me.  How could anyone possibly want to live with this horribleness for that long?  

And then I met Eddy.

I was fortunate to meet Eddy in person at the 2016 ALS Research Forum.  Admittedly starstruck, I whispered to Travis, "Look that's Eddy!".  You see to me, he was a superhero.  Through social media, the ALS community and his own personal "Let's Roll" website, I knew of Eddy.  Quite frankly, you could not be a part of the ALS community and not know Eddy.  Gathering the courage to introduce myself, I expressed my thanks for all he does and confessed that  he was a celebrity to me.  Eddy said he felt the same way about me, what that did for my ego!  Friendship ensued and we stayed in touch.  He made me feel special.  That was who he was.  Eddy has tons of friends, those he has met in person and those he has not.  He made everyone feel like they had a special relationship with him.  With his cheeky sense of humour and light up a room smile, you could not possibly know Eddy and not be enamoured with him.  Who of us could do the same while being paralyzed and unable to speak?

It takes more than a person.  It takes a superhero.  

Eddy never gave up on advocacy, 26 years of it!  I can tell you that after 5 years of it I am exhausted and almost every day I feel like giving up.  Not Eddy, he lifted me up, not just through social media but by personal texts and emails, and like I said, I'm not the only one.  He gave us personal encouragement which translated to comfort, strength and perseverance.  

​I am proud to have Eddy as my partner on our MP letter-writing campaign.  It began through a series of texts where we expressed our frustration at the lack of government funding.  We thought, "how can people not be outraged" and "why doesn't our government care?".  Eddy & I wanted to do something to hold our politicians accountable to their unanimous approval and passing of Motion-105, not just moan about it (be a doer not a talker as my father always says).  Through collaboration (it takes a village), we were stoked when the number of emails sent exceeded 1000.  Of course, immediately Eddy set the next goal at 1500.  Let's help him reach, nay, surpass it.  We have just under a week left before we close the campaign to ask our MP's to follow through on Motion-105 and put Capture-ALS in the next Federal Budget.  

Please share the following link with your community:  

Email your Member of Parliament  Help Create a Future without ALS

Special hugs and condolences to your family Eddy.  Their dedication to not just supporting you, but to all of us fighting ALS goes beyond what words can express.

I truly don't know how to continue the fight without you leading the way.  I don't know if I can do this.  However, in order to honour you, make you proud, and do my best in some tiny way to continue your legacy, I have to at least try.

Eddy, I will miss you my friend, you were one of a kind.

Let's Roll.

Thank you so much to all who have participated in our letter-writing campaign of holding our politicians accountable to their unanimous promise of Motion-105.  Many of you have signed and sent the email link to your Member of Parliament and many of you have sent personalized letters.  

THANK YOU!!!

Though our MP's are currently away on Christmas vacation, we are continuing our campaign as we thought it might be a good idea to have emails and letters waiting on their desks for the New Year so that research funding for ALS is on their minds!  We will continue the campaign until mid-January, as the draft Federal Budget for 2019 will most likely be released in February, before finalization in March.

Many people use the holiday season as a time for giving back.  If you would be so kind as to share the email link  als.good.do/captureals/emailyourMP/  with your friends and family, it would provide hope and a smile to every Canadian suffering with ALS.  Perhaps I could be so bold as to ask those of you willing to make a difference, to email the link to your contacts.  This is a way people can be charitable this holiday season that costs nothing!

My friend Eddy describes our ask beautifully:

I try to think of ways to increase awareness for ALS.  This initiative may have been thought of by others, but I thought I would give it a whirl!  See the response from Canada Post below.  It may not work, but I appreciate the personalized reply.  Especially as Canada Post is not in everyone's good books right now!

​Chairperson of the Stamp Advisory Committee
CANADA POST CORPORATION
2701 RIVERSIDE DRIVE SUITE N1070
OTTAWA ON K1A 0B1
 
November 9, 2018
Hello,                                       
 
My name is Carol Skinner, and I was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease) at the age of 41.  I would like to introduce ALS as a suggestion for a stamp subject.
 
ALS is a motor neuron disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body.  Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.  There are 3,000 Canadians living with ALS, as one dies, another is diagnosed.  There is no cure for people living with ALS and most will die within two to five years of being diagnosed.  
 
People living with ALS face a difficult journey.  It is with strength and courage that people with ALS battle this devastating disease. It is with strength and courage that family and friends of people living with ALS persevere and support their loved ones.  It is this strength and courage that allows people affected by ALS to maintain hope.
 
It is for this reason I think ALS should be considered as a Canada Post stamp subject. This will help increase awareness and advocacy for such a devastating disease.  We should use platforms such as these to provide hope to Canadians suffering from ALS.
 
Its importance in the Canadian context:
 
Liberal Member of Parliament Mauril Bélanger died of ALS at the age of 61.  He was a champion of the people who fought for language rights and women’s equality.  On January 27, 2016, Belanger made history when he became the first MP in the House of Commons to use an electronic voice, re-introducing his private member’s bill on gender-neutral lyrics for O Canada.  The bill passed in 2018.
 
Any significant anniversaries or upcoming events:
 
June is ALS Awareness month in Canada and every summer Walks for ALS are organized across the country.  The Ottawa walk for ALS occurs every June.  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 Canadians living with ALS and invest in research to make ALS a treatable, not terminal disease.
 

Ideas for artwork:


The Blue Cornflower is the international flower of hope for ALS.        
 
 

Thank you for your consideration of my stamp proposal.  I am aware that it may take up to two years for this to happen, but I would kindly ask if there is any way to expedite this process in my special circumstances as I would love to be alive to see this idea come to fruition!
 
Please feel free to contact me with any questions.
 
Kind Regards,
 
Carol Skinner

rolyskinner@gmail.com
www.livelovelaughwithcarol.com
​

When it comes to ALS fundraising, I have been struggling with an elephant in the room: am I asking for too much, too often?

​As an ALS Society of Canada Ambassador, I appreciate the importance of advocacy and fundraising efforts. You're already aware of the devastation of the impact of an ALS diagnosis on an individual and his/her family.  And yet, I often feel awkward, embarrassed and shy about participating in fundraising initiatives.  How can I continually ask year after year, event after event, my circle of people to donate again and again?  You have supported before so I don't want to impose.  

I have heard this from family members as well who feel they have already asked too much of their friends.  Even though it could be that I am simply living too long and most with ALS do not have the chance to ask as many times as I do, the opportunity to raise awareness - not just funds - is too much to resist.  I have surpassed the initial "best before" date given to me by my neurologist so how could I possibly stop now! When thanking Robin after the 5th Curling for Carol Bonspiel, I even joked that when she first said it would be an annual event, no one expected me to live this long.  As you know, the work involved in organizing a fundraiser like that takes phenomenal time and effort.  Every year that she pulls it off is a bonus, not an expectation.

And yes, I know, these awkward feelings are probably exacerbated because I am a polite Canadian and don't want to be rude by asking anyone for anything.

Another conundrum is when I can't physically be present at fundraising events.  For example, I had intended to attend the Ottawa Hike for ALS this past fall; however, I was not well enough to be participate.  After having fundraised for the event, I carried such guilt as I felt like I had broken a promise.  

Hence the elephant in the room.

When Heather shared the following email with me, I was reassured. That she experienced a similar feeling inspired this blog post.

​Subject: Tradition continues👑

Hello again - 

Although this year’s ALS Walk overlapped the time that we spent with Carol celebrating her birthday, I had still originally planned to continue to fundraise for the sixth year in a row. 

I then waffled and didn’t send the link out because it felt strange to ask for support without participating this year. When I made my “self-donation” this morning though, it got me thinking.

After this last visit, I now realize that EVERY walk I make is one that Carol cannot; that the visibility and fundraising must continue - with no treatment and no cure, there’s no time to spare.

So, if you’re so inclined, would you help with a donation? If so, please click on the donate link below and complete the form. I promise I will make up the miles and then some.
​
The community needs these funds to support local people living with ALS through support groups, equipment lending, and transportation. Your donation also goes to support research projects around the world. Having seen what Carol needs, is able to borrow, and use underscores this is a very meaningful way. 

To support now, link here. Thank you.

And yes, my new goal is awareness every day, not just walk day... 

With my gratitude, 
Heather

PS - And oh yes: we wore our “walk crowns” at her birthday party. 
PPS - For those who have given your time and support past Octobers, I’m smiling thinking of you and looking forward to next year already 👑🥂❤️🍂🐕

Beautifully put Heather!  

Regardless of how many times I have asked before, or my fear of coming across as impolite, I will continue to fundraise for those who have not had the luxury of living past one or two years of diagnosis.  I will be their voice and know that you are all adults and can decide to donate/not donate, fundraise/not fundraise, advocate/not advocate.  I promise to not be offended if you are unable to participate when asked, if you promise to not be mad at me for asking again (and again, and again...).

Thank you to my incredible, kind and thoughtful cousin Chelsea!

As part of this year’s ESDCCC (Employment and Social Development Canada Charitable Campaign) we have been encouraged to tell stories about why we give, so I thought I’d share mine.

This is a photo of my cousin Carol and I in Byward Market when I was visiting from Vancouver in the summer of 2013. It was taken just months before Carol was diagnosed with ALS, Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s Disease) – a motor neuron disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, people with ALS lose the ability to walk, talk, eat, swallow, and eventually breathe.

Carol was diagnosed on September 19, 2013 – she was given anywhere from two to five years to live, with a disease for which there is no cure. You may not hear much about ALS, and one of the reasons is because for every person that is diagnosed in a year, a person previously diagnosed dies. As a result, there is never a large group of people living with the disease in Canada – and far too many people dying from it.

Carol describes September 19, 2013 as the day she was handed a death sentence. One, I’m grateful to be able to say, that she is still outliving. On September 19 of this year, less than a month ago, Carol made it to 5 years living with ALS. She’s one of the lucky ones. Others are not so lucky - as you may be aware, long-time Member of Parliament Mauril Belanger was diagnosed shortly after the 2015 election, and died only a few months later.

One of the many reasons I decided to move to the NCR was to be able to spend more time with Carol, who is such a wonderful person – so vibrant, positive, and full of life despite the circumstances. To see her battle this deadly disease on a daily basis…well, donating to the ALS Society for the 2019 ESDCCC is one meaningful thing I can do to help Carol and others facing a similar fate.

I was really happy to see that the ALS Society is one of the 16 Health Partner organizations in the campaign. It’s also great to know that the admin costs of donating are low, because I know after the Ice Bucket Challenge the ALS Society has been trying to come up with a low-cost awareness campaign. And though I was given the option to keep my donation anonymous, I chose to let the ALS Society know that I was donating, because I’m proud of my cousin and all of the work she is doing to raise ALS awareness.

Carol works incredibly hard despite her body slowly shutting down on her. She is an active spokesperson for the ALS Society of Canada, and has been involved in many ALS Awareness events like the flag raising at Ottawa City Hall for ALS Awareness Month in June, being the Lead Walker for the ALS Walk two of the past four years, and a spokesperson for the ALS Society at the House of Commons ALS Caucus.

If you want to get to know more about my cousin Carol and her life with ALS, please feel free to visit her website, where she has been documenting her journey:https://www.livelovelaughwithcarol.com/

Carol is why #iGive, and for me she is the reason the ESDCCC is so important. I encourage each of you to think about the issues that matter to you, and to donate to those causes during this year’s campaign.

Thanks for your time,

Chelsea Sharman

 

Call for Help!

Will you help me make a difference on behalf of all Canadians living with ALS?

​I have initiated a letter-writing campaign to hold our government accountable to their promise of supporting national efforts to find a cure for ALS at the earliest opportunity!  Meaning, we want to see direct and targeted funding towards research for ALS on the 2019 Federal Budget.

We have made it easy for you to participate by clicking on the link below, in which you will find our e-advocacy website where you can email your MP directly.  I am also asking that you send a good old fashioned letter by mail (postage is free!).  We have created a generic letter that is easy for anyone to send out.  Feel free to personalize, I did and have included my personalized version below.  After I sent it, I actually met with my MP who promised to support us.

Many thanks to Dad for writing the initial draft of the letter with the help of Mom and Chelsea.  

Thanks to Eddy "Let's Roll" for inspiring me to do more, for his french translations, and his unstoppable advocacy.

Thanks to Bill for his petition e-1451, which the government responded to by stating they have given some money in the past, and basically answered with spin and of course no real answer.  Although it may not be a "win" I see it as a stepping stone and continued pressure that they cannot ignore if we keep asking!

Thanks to ALS Canada for their efforts and collaboration in helping us initiate this campaign and supporting us in making our voices as loud as possible.

And thanks to you, for making a real difference to people who are suffering.

<Insert name of your MP>
Member of Parliament for <Insert your riding>
House of Commons
Ottawa, Ontario
K1A 0A6
                                                                                            October 11, 2018    ​                                                                                                                                                                                                                                                       
Dear Minister<Insert MP name>,                                                                   

I am writing as one of your constituents to express my concerns for Canadians living with ALS. 

ALS is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body.  As the muscles break down, a person living with ALS will lose the ability to walk, talk, eat, swallow and breathe.  It is a DEATH SENTENCE.  There is no cure and most die within 2 to 5 years of being diagnosed.

ALS is more common than you might think; it has a high incidence/low prevalence rate.  The incidence of ALS has an estimated lifetime risk of 1 in 400.  The reason there are 3,000 Canadians living with ALS 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 an event that kills Canadians, the government does whatever it can to prevent this from happening again.  Where is the same resolve in treating the killer ALS?

On April 5, 2017 Motion-105 was passed UNANIMOUSLY by our Members of Parliament:

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 play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.

The ALS community has never been as hopeful as with the passing of this motion.  That changed when the 2018 budget presented ZERO targeted dollars towards ALS research.  Over a year and a half later, we are left waiting and left dying.  Where is the action supporting M-105?  Where is the government leadership role?

The ALS Society of Canada has authored a strategy, which answers this motion. It’s recommendation is that the Government of Canada invest $35 million over the next 5 years in CAPTURE-ALS, a groundbreaking, inter-disciplinary, foundational project that will build capacity for research internationally and across Canada.

Will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?

ALS is not an incurable disease it is simply grossly underfunded.  
Let ALS stand for ALL LIVES SAVED!

Sincerely,
<Sign your name here>
<Add your phone number>
​

10 octobre, 2018
<Insérer le nom de votre député.e>
Député.e de  <Insérez votre circonscription>
Chambre des communes
Ottawa, Ontario
K1A 0A6
                                                                                                                                                                                                                                                                                                                                                                                                                           
Monsieur / Madame  le / la <Insérer le nom de votre député.e>,

Je vous écris en tant qu'un de vos électeurs pour exprimer mes préoccupations pour les Canadiens vivant avec la SLA. 

La SLA est une maladie qui paralyse progressivement les personnes car le cerveau n'est plus capable de communiquer avec les muscles du corps. À mesure que les muscles tombent en panne, une personne atteinte de la SLA perdra la capacité de marcher, de parler, de manger, d’avaler et de respirer. C'est une CONDAMNATION À MORT. Il n'y a pas de remède et la plupart meurent dans les 2 à 5 ans suivant le diagnostic.

La SLA est plus courante que vous ne le pensez, elle a un taux d'incidence haut / de prévalence faible. L'incidence de la SLA a un risque à vie estimé à 1 sur 400 (NIH US). La raison pour laquelle 3 000 Canadiens vivent avec la SLA est due à ses ravages et à sa rapidité de destruction.

Le gouvernement fédéral a le devoir de protéger la vie des Canadiens. Chaque fois qu'il y a un incident qui tue des Canadiens, le gouvernement fait tout ce qui est en son pouvoir pour empêcher que cela se reproduise. Où est la même résolution dans le traitement de la SLA mortelle?
Le 5 avril 2017, la motion 105 a été adoptée À L'UNANIMITÉ par nos députés:

Que, compte tenu du décès de plus de 1 000 Canadiens chaque année, y compris la perte tragique de l'honorable Mauril Bélanger, ancien député d'Ottawa — Vanier le 16 août 2016, à la suite de la sclérose latérale amyotrophique (SLA):
(a) réitérer son désir et son engagement, en collaboration avec les intervenants provinciaux et territoriaux, de lutter contre la SLA par la recherche et la sensibilisation; et
(b) demander au gouvernement de jouer un rôle de premier plan dans le soutien à la recherche sur la SLA et de soutenir les efforts nationaux visant à trouver un remède à la SLA dès que possible.

La communauté SLA n'a jamais été aussi optimiste qu'avec l'adoption de cette motion. Tout cela a changé lorsque le budget de 2018 a présenté ZÉRO pour la recherche sur la SLA. Plus d'un an et demi plus tard, nous sommes en attente. Où est l'action à l'appui de M-105? Quelle est la stratégie globale ?

La Société canadienne de la SLA a rédigé une stratégie qui répond à cette motion. Elle a recommandé que le gouvernement du Canada investisse 35 millions de dollars au cours des cinq prochaines années dans CAPTURE-ALS, un projet fondamental, interdisciplinaire et fondamental qui renforcera les capacités de recherche à l’échelle internationale et à l’échelle du Canada.

Soutiendrez-vous la demande de la Société canadienne de la SLA concernant le financement fédéral ciblé à la recherche sur la SLA dans le budget fédéral de 2019?

La SLA n'est pas une maladie incurable, elle est simplement sous-financée.


Cordialement,
<Signer votre nom ici>
<Ajoutez votre numéro de téléphone>
​

Charity Profile
ALS Society of Canada https://www.als.ca/get-involved/volunteer/ambassadors/
Ottawa Hike for ALS on September 29th, this is the link
 
The Enduring Bonds of Sisterhood
 
I was diagnosed with amyotrophic lateral sclerosis (ALS) on September 19, 2013, at 41 years old.

The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live.  It is a day that those of us living with ALS will never forget.  It is an unwanted anniversary, a marker of shock and fear, a countdown of the years, months, days, minutes that we have left.

I woke up that day without a clue as to how my life would change.  I went through the dreaded needle in the muscle test and the neurologist kept saying, "I'm afraid to say this is quite serious".  My husband Travis and I were trying to focus on what the doc was telling us…no tumours...no blockages...sound back...sound brain...nerves going to muscles...motor nerves not affecting sensation...degenerative condition...motor neuron disease...Lou Gehrig's disease…no known reason….ALS...progressive...no treatment…no cure... shortened life...2-3 years…

I must admit, before that day, my awareness of ALS was limited, so of course, we did what the doctor told us not to do after that appointment, we went home and Googled ALS.  At that moment, our spirits were crushed.

Of course, this is a devastating tragedy for my family and myself.  We had to sell our home to move into an accessible rental.  I am losing my body, in a way that is terrifying as day by day there are activities of daily living that I can no longer accomplish on my own.  I have lost my career as an art therapist facilitating groups for individuals with mental health and substance use disorders.  I am losing control (which is particularly difficult for someone who is known to have control issues!), and we have lost our future dreams.  ALS is an illness that is at the forefront of our thoughts 100% of the time.  

In 2015 as well as 2017, I was asked to be the lead walker for the Ottawa Walk for ALS.  My Kappa Sisters throughout Canada and the US (even China!) rallied to help me raise funds for ALS and although I haven’t seen many of them since University they helped me to acquire over $17,000 for the ALS Society of Canada.  My best friend, maid of honor and Kappa sister Heather Smith Nuñez attends the Hudson Valley Walk to Defeat ALS every year, travels to attend ALS fundraisers with me in Canada, and has been a champion on my behalf.  Annemarie Brissenden, an active Kappa alumnae travels to attend ALS walks with me as often as she can.  The bonds of sisterhood are impenetrable.   Delta Delta chapter at McGill University has fundraised for ALS on my behalf, hosting a “Keep Calm and Kick ALS” dinner as well as a dance-a-thon, raising over $2000 for ALS as well as much needed awareness.  Without even having met me. 

I would like to personally thank all of my Kappa sisters for supporting me by participating in fundraisers to help defeat ALS.  I am so proud to be a Kappa and value the power of sisterhood.  Kappa lifts me up and gives me hope, where I once had none.

I feel so privileged to be an advocate on behalf of ALS Canada. Due to my illness, I was forced to quit my job immediately upon diagnosis.  At that time I was trying to focus on my family, and myself, though something felt missing.   It was extremely difficult to leave behind a job that brought so many fulfillments to my life.  I was proud of the work I did in giving back to others, and being an advocate for ALS has replaced for me what I have lost in my career.  It brings back purpose and meaning to my life.  Through advocacy, I found a way back to myself and who I am as a person.  Please visit my blog at www.livelovelaughwithcarol.com

In the past five years of living with ALS, my husband and I have come to realize that we are blessed.  Our friends and family surround us with love, we have made it a priority to travel while I still am able, and we have been trying to seize the opportunity to make moments matter by appreciating what is really important in life.  I have had a chance to reflect on my life and be proud of my accomplishments of giving back and making a difference in this precious world.
 
-Carol Sharman Skinner
Delta Delta Chapter
 
 
Meet Jordana Easterbrook!
Jordana is the Beta Psi Chapter Adviser, Advisory Board President and an ex-Officio member of the Beta Psi House Board. She has been working with the chapter since 2013 when she graduated from Delta Delta chapter (McGill University). The Advisory Board currently consists of 12 wonderful advisers dedicated to supporting and guiding the chapter and Jordana is very proud to have the opportunity to serve as their president. As the Chapter Adviser, Jordana works closely with the active women to support them in navigating Fraternity requirements and resources, in addition to serving as a helpful voice for chapter decision-making. Her favourite part of working with the chapter is having the opportunity to mentor young women, during and after their university experience, and she especially enjoys the friendships she has built with these amazing women. 

​In her personal life, Jordana works in marketing for Deloitte Canada. She is the (mostly) proud owner of two wiener dogs and lives with her husband in the Beaches area of Toronto. She looks forward to many more years of Kappa volunteering and is always happy to chat if anyone is interested in learning more about becoming a volunteer!

Click Here to Pay Dues Now
​
Paid Members List (July 1, 2018 - June 30, 2019)
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So here I am, exactly 5 years to the day of my ALS diagnosis.  Always a difficult day, but this one is particularly hard.  The doctors told me I wouldn't wake up tomorrow.  2-5 years left to live is what I was told.  I know I should be celebrating that I beat the odds, but to be honest I just feel sad.  I'll never forget that day, and every day since ALS has been in my thoughts 100% of the time.  I just can't let it go.  Don't get me wrong, I am so grateful to have had the time to live out many of my dreams and am happy to still enjoy making moments matter with friends and family.  As you can imagine, living with ALS is overwhelming, and often becomes too much.  Travis and I do our best to live life as best we can, but behind the scenes we are both devastated.  I haven't given up, in fact I am about to launch a letter-writing campaign to our Government to hold them accountable for M-105.  Stay tuned, I will need your help!  For today, though, I wanted to be real and I promise to try to be gentle with myself.  If you want to help, cat videos are a surefire way to make me smile.

Travis & I are VERY excited to announce that Ottawa is hosting its first ever, Inaugural Ottawa Hike for ALS and Family Day.  The hike will be held on Saturday, September 29th at Mer Bleue Conservation Area on Ridge Road in Ottawa.  On our 9 Year Wedding Anniversary!
 
Mer Bleue is the largest bog and natural area in Canada’s Capital Region and the second-largest bog in southern Ontario. 
 
Participants at the Ottawa Hike for ALS will be able to choose from hiking the Mer Bleue Boardwalk which is a  1.2 km universally accessible boardwalk or  hiking a 2.5 km trail or taking part in a trail run of 7 km’s.  There is something for everyone.
 
The hike will also include fall-themed refreshments, a raffle of nature or Canadian made products and a scavenger hunt for the children.
 
Registration begins at 9:00 a.m. at parking lot 22 and the hike starts at 10:00 a.m.

Date: August 2, 2018
Author: Dafna Izenberg, Francine Buchanan & Claude Lurette

When Lisa Crigger advertises for staff on Kijiji, she’s mainly looking for people who can follow direction. Crigger has cerebral palsy and uses a wheelchair; she needs assistance with bathing, housekeeping, and child care. When her first child was born nearly eight years ago, she initially relied on attendant services from a Toronto-area agency, which she found frustrating. “The agency would tell you when the staff were available,” she says. “I don’t like to be told I have to be home by 7 or my kid is not going to have a bath.”

Things improved in 2013, when Crigger became a self-manager with Ontario’s Direct Funding program, which allows adults with physical disabilities to employ their own attendants. That means recruiting, hiring, and sometimes even firing people. “My staff will tell you I was pretty scary when they first came to meet me,” she says. “I didn’t want them to think they could mess around with me and not show up for work.” But Crigger is confident her staff would also describe her as a good boss; two of them have worked for her from the time she entered the program. “They just need to understand that [things need to be done] my way, and this is the way it’s going to be. Because it’s my house, and my children.”

For some people with disabilities, Direct Funding is a highly desirable alternative to government-funded home care, a system in which the number of hours and type of service a person receives is determined by case managers at the local health integration network, and the provision and scheduling of services is handled by private or not-for-profit nursing agencies which employ nurses and personal support workers. For other people, DF can be the difference between full-time inpatient care and being able to live at home. The program has served about 1,600 people since it started more than 20 years ago. In the mid-1990s, it had a roster of about 100 participants and an annual budget of about $4.4 million; in 1998, its budget was increased to $18.7 million, and the program grew to include about 700 people. In the past three years, DF has received an additional $5 million per year from the Ministry of Health and Long Term Care, so that it presently serves almost 1,000 people on a budget of $45 million a year. Here’s a look at how it works and whether its reach is wide enough.

Who is eligible for Direct Funding?  

Rooted in the independent living philosophy, Direct Funding operates on the premise that “consumers are the experts in their own disability,” says Leanne Larmondin, the program’s provincial coordinator at the Centre for Independent Living in Toronto (CILT). To be eligible, a person must be at least 16 years old, reside in Ontario, and hold a valid OHIP card. They must need physical assistance with essential daily activities such as eating, dressing and using the washroom as the result of a permanent physical disability. Participants must demonstrate an ability to direct and manage their own care—identify exactly what they need, train staff to provide it, and manage all aspects of the employment of their staff. There is no means test; people can qualify regardless of their income or other financial resources.

When applying for DF, potential participants must provide a very detailed proposed schedule and budget—how much of an attendant’s time, down to the quarter-hour, they need each morning, evening and bedtime. Their budget will depend on the kind of care they need at different times of day. For direct, hands-on service, DF provides between $16.50–$19 an hour; if a participant needs someone to just be on hand in the afternoon, they can budget for minimum wage; if they need an attendant to sleep in their home but not provide direct assistance overnight, they can budget for a flat rate of about $50. For most applicants, the maximum number of hours allowed per month is 212 (or seven per day). The program also provides significantly bigger budgets for people with higher needs—those on a ventilator, for example. Of the 962 people currently participating in DF, 75 might otherwise be in an ICU bed, Larmondin points out. An average budget is roughly $4,000 a month. Some participants receive more than $14,000, and others as little as $500.

After applying, potential participants are placed in a queue for an interview, and can wait as long as a year before being contacted. Currently the wait list has nearly 500 people. If a person’s circumstances are exceptional—for example, if DF would allow them to move out of long-term care—they can move up the line. Interviews are typically held in one of 11 local independent living centres across the province. Potential participants are interviewed by a panel of three—typically there is one representative from the Toronto office, one from the local centre, and one local DF participant. “That peer part of the interview is really important,” says Larmondin. “They know what it’s like to recruit and hire and manage staff in the local area, what it’s like to try and staff a bedtime shift in the middle of February, for example.”

The interview lasts between two and three hours, with the panel asking about a person’s knowledge of Ontario employment law and how payroll deductions work. “It’s more of a negotiation process than an assessment,” says Larmondin. The panel may also ask for more information about the proposed schedule—“That sounds like a little bit long for shower; can you explain why it takes so long?”—so as to come to a mutual understanding about what the budget should be. After the interview, the panel meets to determine eligibility, and they sometimes turn people away. “[For] some people who are new to their disability and to receiving services, directing their own attendants might be a little bit foreign to them, so they might need a little bit of life skills in order to meet the eligibility for that category,” says Larmondin.

How does Direct Funding work?

Once in the program, participants receive monthly payments via direct deposit. They pay their staff every two weeks, often with the assistance of a bookkeeper (most budgets provide $170 a month for this service). They report every three months to the Direct Funding office, providing an account of how all the money was spent. Participants are expected to ensure that staff are receiving vacation pay, are compensated properly for public holidays and that CPP, EI and income taxes are deducted.

Participants can employ whomever they like—their attendants need not be trained personal support workers or health care professionals. For example, they can hire a neighbour for one hour at bedtime—not always the easiest shift to fill. “My best attendants are not qualified,” says Eddy Lefrançois, who lives in Dubreuilville, Ont., a town of 650 three-and-a-half-hour drive north of Sault Ste. Marie, and has lived with ALS since 1992 (more than 20 years longer than doctors expected). “They are just good, hard-working people. I train them to my needs, and I am more than satisfied.” 

When a DF participant isn’t happy with an employee’s performance, there’s no third-party to phone and complain to. Lisa Crigger calls her staff into her bedroom for sensitive conversations. (“Is this how your kids feel?” one of her staff joked to Crigger during one of these talks.) She says she’s always been good at speaking frankly with people, but she doesn’t always relish being “the boss.” “To be honest, it’s really hard to do,” says Crigger. “It’s hard to be a mother, to be a wife, and have people come in and out of your house every day. But you have to make it work somehow.”

Does Direct Funding reach as many people as it should?

Larmondin has heard DF described as “the best-kept secret in health care.” The program is always trying to recruit new participants, visiting MS and ALS support groups and making presentations to LHINs and care coordinators. “We tell them, ‘We can take people off your caseload if you know anybody who might be suitable for the program,” she says.

But why go out in search of new participants with people waiting a year or longer for an interview? “We never know when a funding increase is going to come down the pike,” says Larmondin. When she started working in DF seven or eight years ago, people were waiting nearly five years to get in. “How big could the program grow? I guess we are almost limitless. The administration of Direct Funding is quite lean and most of the funding goes to participants’ budgets, so as our funding increases, so can our number of participants.”
Lisa Crigger knew about DF for years before applying and thinks it’s well advertised in the disability community. Some people she knows who might be eligible for DF have told her they aren’t interested in the program. “They like that somebody else is in control,” she says. “They don’t have to worry if staff don’t show up.” At the same time, she wonders if people who aren’t eligible for DF might benefit from it—people who themselves aren’t able to direct their own care, but have a parent or spouse who could.

This question is one which Tracy Odell, an executive on the board of directors at the advocacy organization Citizens with Disabilities Ontario, has considered as well. The requirement that people be able to direct their own services was critical to the program being approved initially by the government, she says, because it offered a measure of protection against abuse and liability. “But now [the program has] been running for a while, it’s more mature, the safeguards are in place,” she says. One of her family members looked into applying for DF for his wife—who recently developed a disability—but was told they wouldn’t qualify because his wife isn’t able to direct her own services. “Somebody who’s older, they need help to figure it out,” says Odell. “They don’t really know what’s the best way to pick me up and help get me on the toilet” (an example of the type of instruction DF participants are expected to be able to give their staff). Odell wonders whether DF would allow some older people who live with a competent family member to stay home. “There are people in hospitals and institutions who would want to be free,” she says.
​
Eddy Lefrançois thinks the wait time for DF is a significant barrier. He knows someone who has ALS who needs DF now; the financial burden of paying for extra services is taking a toll on this person’s marriage. “I once read that it was cheaper to have DF funding than pay to have people with disabilities live in a hospital,” Lefrançois says. “I can attest that being home is much more pleasant and rewarding. This has become a survival need for me. I would be confident to say for others too.”

For years I have been wanting to take Travis to see the Dave Matthews Band.  We have been long time fans and Travis enjoys their South African connection.  Imagine my delight when I discovered they were coming to Ottawa to play at our annual Bluesfest concert.

We have attended Bluesfest several times (Tragically Hip, Crowded House, The Killers, Cypress Hill! to name a few) and have always enjoyed it.  The last time we went, I was living with ALS and it was difficult with the crowds, parking etc.  I noticed the wheelchair section, however, it was off to the side, people are penned in like cattle and are only allowed one friend (they call it companion).  Instead, I wanted a  way to make Dave Matthews a special experience.

I learned about a VIP section, where you pay double the ticket price, however, have room to move around and have your own bar and bathrooms.  So I called Bluesfest directly and asked about wheelchair accessibility in the VIP zone.  The person on the phone informed me that although the reserved seating section is not accessible, the "standing room" part is, and that they would have staff who would find me a spot where I could see the stage.  I thought great, freedom to move around, allowed to have more than one friend and a VIP experience, perfect!

Travis had a friend who upgraded her festival pass so she could join us in the VIP section, and I had a friend I was hoping to say hello to in general admission.

We made our way to the VIP Tent and explained our situation to the people at the gates, they gave us both accessible wristbands as well as VIP wristbands and stated that there was a wheelchair platform in the VIP zone and assured me having another friend was no problem.  They let us know that the platform was first come first serve and that if I wanted to save my place, not to leave.

We found a spot, staff brought over two chairs for Travis and our friend, and chatted happily for TWO hours (mindful of the fact I was told not to leave, I didn't want to lose our spot), waiting for the concert to begin.  

As soon as Dave Matthews started performing a staff member approached us and told my friend that she couldn't be there as I was only allowed 1 companion.  We explained that we had called ahead of time, Bluesfest staff at the VIP gates told us where to go and that staff on the platform brought over chairs and we had no problem for the past two hours.  Of course, there was plenty of room on the platform behind us for more wheelchairs.  She stated that she needed my friend's chair for another wheelchair companion.  Travis took her aside to explain our situation further and found another chair for the other person!  She told Travis that despite what other staff told us, she had been there for 15 years so she was right.  As soon as another wheelchair came on the platform, she told my friend she had to leave.  I wasn't about to have her attend alone when she spent extra money to be with us, so the three of us left the platform to go on the grass in front of it.

We noticed cocktail style tables and stools where some very boisterous, drunken festival attendees were and Travis asked if we could use one of their stools.  As soon as they saw me, they generously put us in front of them to make sure I could see.  Point being, drunken people were much kinder than the staff!

Now we are at about the 4th song and another staff member in a grey shirt approaches us claiming to be the head of accessibility issues.  I thought to myself "what great service, someone noticed what happened and is coming to fix the situation", so I tell her what happened, and with a blank stare she states "I'm not sure about any of that, but I noticed your wheelchair and you aren't supposed to be in the VIP zone".  Caught off guard, we stare blankly at her, and she states "your husband doesn't have the wristband".  Travis lifts his wrist and shows her both his wristbands.  "Well, I need to see your tickets".  Ummm, okay so you are telling us you think we snuck out of the wheelchair section to be in the VIP zone, and I guess stole some wristbands???  I show her my tickets and ask her about what we've been through.  "I can't do anything about that, write a letter" she states.  She leaves, and I break into tears, embarrassed, and publicly shamed!

I've said it before and I'll say it again, don't complain without being a part of the solution!  Don't expect others to do for you, if you want something to change, be a part of that change!

So of course I wrote to Bluesfest, the Dave Matthews Band, and seeing as the Ottawa Citizen is one of Bluesfest's biggest sponsors, my friend Kelly Egan of the Ottawa Citizen who has written multiple articles on my struggle with ALS.  I have included my letter below if you are interested.

I was happy that the Executive Director of Bluesfest, Mark Monahan, personally called me upon receiving my letter.  He offered to refund my ticket and offered me a free ticket to Cityfolk.  I had attended Cityfolk last year (it is much more chilled than Bluesfest!) and commented on the fact that I appreciated that I could bring an attendant for free.  Mr. Monahan then informed me that for Bluesfest, your companion gets the VIP Zone for the price of a regular ticket.  I couldn't believe it, then why wasn't I told that when I called asking about VIP Zone and wheelchair accessibility?  Why did we pay full price for VIP if we didn't have to?  And why, oh why, when we ended up in the VIP Zone off the platform, were we told we didn't belong there because we had a wheelchair?  Why is this not written anywhere on the website?  I think this is a policy that nobody knows about!

I explained to Mr. Monahan that while Bluesfest makes an attempt at accessibility, people with disabilities do not have the same rights (Equity vs. Equality).  An able bodied person may also lose their spot if they move, however, chances are they will be able to find another spot to see the stage from.  So how about creating a space where people with disabilities are allowed more than one friend (as other attendees can have, equity!), and can move around?  A simple solution, have more than one wheelchair platform!  Also, how about training the staff, especially those in the disability section, a lesson on compassion.

Instead of a free ticket to Cityfolk, I asked if he would be willing to donate a Bluesfest Pass to our Curling for Carol Bonspiel in March, which we could raffle off to raise money for ALS Canada, and he agreed (I also invited him to bring a team)!
 
So despite the fact that we had a ruined bucket list experience, I'm stoked for the raffle prize, and take it as a win.

I also offered to be a voice for those with disabilities for those attending Bluesfest next year, whether it is training staff, or organizational issues, so hopefully others will be treated with dignity and have an awesome festival experience, despite their disability.

...I'm still waiting to hear from Dave Matthews...

Dying Woman brought to tears at Dave Matthews Band Concert by Ottawa Bluesfest Staff 
Cc: Mark Monahan, Dave Matthews, Kelly Egan (Ottawa Citizen)
 
My name is Carol.  I am 46 years old.  I am in a wheelchair and living with ALS, a terminal, neurodegenerative disease, which progresses as I lose all muscle function in my body.
 
I am married to Travis, a South African, and a caregiver to me.  He is loving and supportive to me during all of the devastating challenges we face.
 
I was thrilled to be able to take him to see a bucket list concert for both of us, The Dave Matthews Band.
 
As I had been to Bluesfest before, I was aware of the wheelchair section and policy of only being allowed 1 friend.  I also don’t like to feel trapped and penned in like cattle so wanted the freedom to move around.
 
So this year I called in advance and discussed with staff the Metropolitain VIP Zone.  I was told that the reserved seating zone is not accessible, however, the party zone is, and that there would be staff who would help to place me in an area where I could see the stage, and I would not be limited to being with only 1 person.
 
My husband and I had 1 friend who upgraded her pass to be able to be with us in the VIP Zone.  When we arrived, we discussed our situation with the staff at the VIP gates and they assured us that 3 of us wouldn’t be a problem and that there was a wheelchair platform in the VIP Zone.  They also told me to not move once I get my place as it is first come first serve basis and if I left, I would give up my spot.
 
Staff on the platform sat us and brought over 2 chairs, one for my husband and one for our friend.  All three of us had accessibility wristbands as well as VIP wristbands.  We stayed in our spot with no problem for 2 hours.
 
As soon as the concert began, a staff I had not seen before came up to us and told us that my friend could not be there as I was only allowed 1 friend.  My friend had on an accessibility wristband.  I informed the staff member that the Bluesfest staff in the purple shirts had put us there, and that I had called before I bought my VIP tickets to ensure that this was possible.  She told me I misunderstood.  I told her I was just doing what the Bluesfest staff advised me to do, all of this happening as Dave Matthews was singing so we were missing the concert.  Then the staff member said she needed our chair as there were none left.  There were 3 stacks of chairs sitting at the tent in front of us.  She told my friend to leave, although there was plenty of room for more wheelchairs behind us.  So the three of us left.  After spending 2 hours waiting on the platform with no issues.
 
In and amongst the crowd (where I could not see) in the VIP section, another Bluesfest staff came along wearing a grey shirt and stated that she was in charge of accessibility issues.  I thought she was there to discuss what happened, that I was literally thrown out of the wheelchair section.  She basically told me she didn’t care and that she noticed my wheelchair and wheelchair people aren’t allowed in the VIP section.  She said my husband didn’t have the proper wristband.  He did as he had on both the yellow accessibility wristband as well as the yellow VIP wristband as we all did.  I guess she didn’t believe us because she asked to see my tickets, which I showed her.  Being the head of accessibility issues, as she claimed, I thought she would care about our situation, but she didn’t and told me to write a letter.  I felt publicly humiliated and spent the rest of the concert in tears.
 
Living with ALS is extremely difficult.  I had chosen Dave Matthews as I only have enough energy for 1 concert. I purchased Museum parking and VIP tickets to reduce any stress and difficulty I might encounter.  I was anxious about attending the event all day, but I was looking forward to providing my husband with a dream concert.
 
I did everything the Bluesfest staff told me to, from the first phone call in which I was told to buy VIP tickets and never told that a wheelchair section was literally in the VIP Zone.  In the end, I felt like a second-class citizen, “separate but equal”.  I do not have the same rights as other concert attendees, and was shamed publicly.
 
You turned our dream come true into a nightmare and have increased my already heightened anxiety about going out into crowds.  I already have a limited life and you are taking more away from me.
 
Sincerely,
 
Carol Skinner
(613) 558-2999
rolyskinner@gmail.com
www.livelovelaughwithcarol.com
 
 

As a person living with ALS I like to keep updated on the latest clinical trials and what is happening with research.  The ALS Therapy Development Institute is a US nonprofit biotech research organization.

On June 13, 2018, Dr. Steve Perrin of ALS TDI hosted a midyear ALS research review webinar. This session specifically outlined what people should be on the lookout for in 2018, including information on Masitinib, CopperATSM, NP001, NurOwn, AT-1501, and other potential treatments.  ALS TDI also updated us on certain clinical trials recently completed I have been following, that read out negative. Tirasemtiv was one, which I almost participated in but was unable due to travel constraints.

They also gave information on the recently passed United States Right to Try legislation.  It was informative to me as there are currently individuals trying to introduce "Right to Try" legislation in Canada.  Personally, I'm not a proponent of "Right to Try", I find too many snake-oil salesmen trying to take advantage of the vulnerable.  You wouldn't believe how many spam comments I get on this blog offering me a cure.  They are mostly "spells" from witch doctors offering a cure from my HIV and Herpes (Don would say "UH, HELLO, ALS BLOG?!?).  I do believe, however, in people having a choice in their treatment and would not oppose Canadian Right to Try legislation.

If you are interested in viewing the webinar, click on the image below.

I am participating in ALS TDI's study called the Precision Medicine Program (PMP).  If you are living with ALS and would like to contribute to much needed research, you can do so from the comfort of your own home!  It is easy to sign up, and fill out the questionnaires.  

Every month or so, I fill out an ALS Functional Review Scale and I receive an automated call to record my voice saying "I Owe You a Yo-Yo today" about 6 times, which is then analyzed by Google!  As I typically do not qualify for clinical trials (usually they call for people within their first two years of diagnosis) this is a method for me to feel useful and hopefully in some small way contribute to the eradication of ALS.  

The graph below is actual tracking of my personal ALS FRS results, and I'm happy to say it demonstrates slow progression (at least for now).  How cool is that?

The ALS Therapy Development Institute is searching for more participants for their Precision Medicine Program.  If this might be right for you check out their website by clicking the button below.

For information on Clinical Trials in Canada, click on the button below.

Global Day
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!

• Celebrate international partnerships and collaborations that make us united in the worldwide fight against ALS/MND.
• Show your support for the Fundamental Rights of people living with ALS/MNDby reading and sharing this advocacy tool.
• Hold a fundraiser for your local ALS/MND association.
  
  

For further information about getting involved in Global Day, please contact the Alliance Coordinator at coordinator@als-mnd.org.

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.

RELATED

• Egan: As ALS steals his daughter, a father helplessly watches on
• Ottawa opens ALS centre amid ‘massive’ advance in basic research
  
  

She continues to advocate for more research funding, pressing MPs to make good on a motion indicating support for ALS federal funds. All the while, she knows clinical trials and experimental drugs likely won’t help her, as she is too advanced with the illness to take part.

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 kegan@postmedia.com
​
Twitter.com/kellyegancolumn

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?”
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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.
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“I guess that would be the best Father’s Day gift. Have a drug for her and let me go.”

MORE: ‘My dad’s been my biggest hero my whole life’

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.
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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.”
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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.”
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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.

New research centre a 'game changer' for neuromuscular disease patients

ELIZABETH PAYNE

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.
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“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.
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“I am so happy that it finally came about,” she said of the research centre.