Hello!

I thought I would ask my network for help.  I am currently looking for home help for Saturday mornings.  I need someone who pretends to love cats (may need to clean up hairballs occasionally), is not shy (they will see me naked), has a personality (can keep up with my talking), loves vacuuming (at least I have a Dyson), has an interest in vegetarian cooking (Saturday is my have someone make a Pinterest casserole day) and has compassion.  Basically, I'm looking for a mom!  The person does not need formal training but does need some experience in caregiving.  Personal Support Workers are desired, students are welcomed and I love people from all walks of life.

I'm putting it to you as word of mouth has worked for me so far, and for such an intimate setting I need someone I can trust.  Feel free to share the job posting below:

​Seeking Female Attendant Care
 
My name is Carol and I have ALS.  I have two cats and live with my husband Travis in Kanata. This is a non-smoking home.
 
I use a Program called Self-Managed Attendant Services or Direct Funding (DF).  The Ministry of Health and Long Term Care funds it.  The Ministry gives me the money directly to hire my own attendants.  There is no Agency.  You work for me directly.  I am the employer and I will train you on how I like my routines to be done. www.dfontario.ca
 
This is a part time job. The starting salary is $17.00 per hour*.  You get paid every 2 weeks and all the standard deductions come off your pay cheque (CPP, EI and Income Tax).  You are covered by WSIB.  
 
Permanent employment is subject to successful completion of a 3-month probationary period.  You will be asked to sign an Employment Agreement that covers the points covered on this sheet as well as confidentiality, performance appraisals and termination.  After the probationary period, the salary will increase to $18 per hour*, with the possibility of a further increase.
 
*If you live outside of Kanata, you will receive a stipend of $4/day for travel expense.
 
You will get your 4% vacation pay on every cheque; therefore, when you take holidays you will not be paid.  You will be paid for public holidays according to the Employment Standards Act.
 
Your main job duties are: 
Assist me with personal grooming, showering, dressing, and transferring 
Circulation exercises
Meal preparation, light housekeeping, vacuuming and laundry
 
My schedule is as follows:
10:00am to 1:00pm –  Saturdays
 
You will be required to supply 2 work related references.
 
If you are interested please contact Carol Skinner at rolyskinner@gmail.com

 

I'm back!

After a much needed vacation from blogging, I am reengaging.

Today is the official 6 year anniversary of my diagnosis.

A few posts ago, I shared the difficult journey of living with ALS for 6 years for both myself and Travis.  

We literally saved each others lives and made a commitment to ourselves to focus on recovery and honesty instead of avoidance. 

Travis had to take medical leave from work and we spent the summer reaching out and accepting help on many different fronts.  Recovery is a full time job.  We each had several appointments per week including but not limited to psychotherapy, hospice help, social work, occupational therapy, physiotherapy, doctor's appointments, etc.  We treated the whole person, physically, mentally and emotionally.  Travis began running and swimming.  To enhance our "new phase" in our journey, we redecorated our apartment.  In fact we were so committed, we felt overwhelmed with appointments and I had to give us Sundays off to reconnect as a couple and take a weekly break.  It was nice to experience Sundays as normal families do!

We are so grateful to Dayne for flying to Ottawa not long after our hospitalizations and being there for us.

We took a 3 day vacation in Algonquin Park, for me, there is nothing more healing than being in nature.

We spent quality time with friends and family.

We were also fortunate enough to take a bucket list vacation in New Brunswick and Prince Edward Island.  Check out our Awesome things on the Travel page of this blog as well as photos on the Gallery Page.

This year, I had given up and felt like I had nothing more to share.  I was exhausted from focusing on ALS and had nothing left in my tank.  Looking back I feel that was the depression talking.  After taking a break to focus on recovery I feel ready to return to advocacy.   

My advocacy includes:

A new page on my website called "Tips & Tricks" for living with ALS.  It is currently and will probably remain under construction!

Increasing my involvement with the International Alliance of ALS/MND Associations.

This month I am attending the 2019 Ottawa Hike to End ALS.

I also continue to connect with others living with ALS to be a sounding board to help navigate the impossible situation of such a devastating diagnosis.

It’s just a few weeks away for the Ottawa Hike to End ALS!  The hike will be held on Saturday, September 28th at Mer Bleue Conservation Area on Ridge Road in Ottawa.  

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, hiking a 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 Canadian made products and a scavenger hunt for children.


Time: Registrations begin at 9:00 am and the Hike begins at 10:00 am  

Location: Mer Bleue Conservation Area: Ridge Rd, Ottawa, ON K0A 2Y0.  Parking lot 22
No dogs are permitted on the Mer Bleue trails 
   
Route: Select your route of choice from either a 7km trail run, a 5km hike or a 1.2km universally accessible boardwalk hike  

Activities: 50/50 ticket sales and scavenger hunt for youth and children. Fall themed snacks and refreshments will be provided. Please bring your own water bottles
 
If you have any questions you can contact Ottawa Hike coordinator Brianne at lisabrianne026@gmail.com  

​

In the time it takes Health Canada to approve potentially life-saving treatments, 500 Canadians will die of ALS.

There are more than 60 ALS drugs in development right now, any one of which could be proven to help save the lives of Canadians living with ALS. The problem currently is that it takes too long for drugs to be evaluated and made available to Canadians.

For people living with ALS, the health system just doesn’t move fast enough.

When you’re living with ALS, you measure time by loss, not by months or years. Which ability will you lose tomorrow? Will you still be able to share a hug? Say I love you? Laugh? Breathe?

How long before time runs out?

Across the country, people are fighting for more time together, to laugh, to love, to live.

This ALS Awareness Month you can join them. Click on the button below to send an email to federal party leaders today, with one simple click, you can let them know that it’s about time to provide timely, affordable and equitable access to tomorrow’s proven treatments.

Travis & I are so grateful for your love and support.

On Monday, June 3rd Mayor Jim Watson proclaimed June to be ALS Awareness Month in the City of Ottawa. 
 
Awareness is important to create shared understanding of the dire need to create a future without ALS. Those who are living with, or have cared for someone with, the disease know only too well how ALS can take dreams, abilities, lives. 
 
Awareness is a big part of creating a future without ALS because it inspires people to take action — whether supporting someone who is living with the disease, volunteering their time, organizing a fundraising event, or making a donation.
 
Families living with an ALS diagnosis right now are in the midst of a challenging journey – one that is overwhelming and can bring feelings of helplessness and hopelessness. This awareness month, we’ll be asking others to act against that hopelessness and helplessness — by honoring the care, love and hope that exists to face an ALS diagnosis. It’s the only way we can create a future without ALS.

​

While I very much appreciate the Mayor's Proclamation, I am disappointed that the City of Ottawa no longer raises a flag in honour of ALS Awareness.  Where are the City's Purple Lights?  How do we get the Canadian Houses of Parliament to light up in purple in honour of ALS Awareness?

You would think I would have this all worked out by now.  Or at least I did.  After living with ALS for 6 years I thought I would have come to a place of "acceptance".  Live my last days out of my head and into each moment.  But that's not what happened.

Living with a "slow progressing" form of ALS, I am considered one of the lucky ones.  I try my best to be grateful for what I do have, instead of resentful of what I can no longer do.  When others see me they see a positive person, an ALS Ambassador with a great attitude, brave and strong.  That is the side I let you see.

There is another side.  One that lives in terror of what is to come.  One who cannot bear to lose control.  One who gets jealous of people dashing into the store, while she waits in the car.  One who wishes she had at least 10 more years pre ALS without knowing what was coming.  One who bears the burden of watching countless others with ALS die, when they were diagnosed after she was.  One who is suffering.  One who feels like a coward, and a fake because she doesn't let anyone see that side of her.  

Anyone but her loving husband that is.  He sees and knows all sides of her.  He watches as his wife slowly loses all parts of herself.  He is by her side as she cries in desperation, devastated that because she is living too long he will only remember his sick wife when she dies, and not the woman he married.  So he doesn't talk about his suffering.  He must be "strong" for her.

The week before Easter was a living hell for both Travis and I.  It did not come on unexpectedly, things had been slowly slipping for months.  While acknowledging that things were difficult, we thought we were doing the best we could, but no, we were both far from it.  Within the same week, we both ended up in hospital.

The best way I can describe what happened, is that after living with ALS for 6 years, the weight became too heavy to bear, and we both broke.

People were shocked.  Nobody knew, many imagined, but we put on a good front, until we could no longer hide what was happening behind closed doors.  Depression.  Both of us.  But not together, we were suffering alongside each other, but ultimately alone.

We have figured out that we cannot only rely on each other.  We needed help.  We were drowning and pulling each other under instead of rescuing each other.  We were each other's everything, but we could not be each other's everything.

I know I'm not alone.  In Jenni Berebitsky's book "ALS Saved My Life...until it didn't" (reviewed in a previous blog post), she mentions though grateful for outliving her prognosis (2 years, she has lived with ALS for 9 years now) there are times when she thinks, "Can we speed this up?  How much longer do I have to endure?".

Travis and I survived and were taught a lesson.  We have accepted help.  It is not fun.  It is hard work.   Recovery is a full time job.  Both of us are now receiving care in many forms; friends, family and professionally.  

We are rising up, being lifted by those whose job it is to help.  It is not a passive process.  We have to engage, participate and accept that we cannot bear this weight alone.

We know that we will be better for it.  Instead of living in a depressive fog, we are committed to working through our pain and fear in order to embrace the rest of what our lives have to offer.

We are so very pleased to welcome another new corporate sponsor to the #2k19 #OttawaWalkToEndALS : CIBC Ottawa!

CIBC believes in offering banking that fits your life, and it is their business to help clients, employees and shareholders achieve what is important to them. CIBC's ability to create value for all CIBC stakeholders is driven by a business culture that is based on common values of trust, teamwork and accountability.

To find out more about the different services offered by CIBC, visit: https://www.cibc.com/en/personal-banking.html or stop in to the local CIBC branch nearest you.
​
Please help me extend a big THANK YOU to CIBC Ottawa for their sponsorship and support!! #WalkToEndALS #ottcity #myottawa#sponsorship #communitypartner

We’re excited to announce that online florist Bloomex Canada has partnered with ALS Canada for their “Get and Give” campaign this year. When you sign up with Bloomex Canada using our special partner account, you’ll automatically get 15% off your purchases until the end of 2019. There’s more! Whether you’re buying flowers, gifts, gift baskets, or balloon bouquets, Bloomex Canada will then give 10% of your purchase to ALS Canada as a donation.
​
Read about this new partnership in a press release published by Bloomex Canada: https://bit.ly/2Cw1lIZ

​

It’s time to break a sweat with Augie’s Quest! 

For a second year, members of Orangetheory Fitness studios from across Canada are sweating it out for ALS research during their national fundraising campaign. Augie’s Quest is taking place at your local Orangetheory Fitness studio between May 1 and 15. Members are challenged to push harder during their workouts to raise money in support of the ALS Canada Research Program - funding high-quality research with the most promise to slow down or even stop ALS. 

In 2018, the ALS Canada Research Program was honoured to receive $250,000 from Orangetheory Fitness and this year, they have upped the ante and are aiming to raise an incredible $400,000! 
​
For information on an Orangetheory Fitness studio near you, visit their website and get involved this year: https://bit.ly/2FRE1HT

Are you the 'trivia buff' in your group? If so - and even if not but you love good game night - this is an event you don't want to miss!!

In support of ALS Canada, and in gearing up for the Kichesippi Beer Workplace Runoff, #SmartandBiggar is hosting their 2nd annual Trivia Night at the Lieutenant's Pump on Elgin Street. Thursday, April 18, 2019 starting at 7:00pm.

Registration is now open at $10/person. To register as an individual participant or as a team (maximum 4 people), please contact Alexandra Wray via email at ARWray@smart-biggar.ca
​
Hope to see you all there! 
#trivianight #fundraiser #runsmartgivebiggar #myottawa #ottcity#aFutureWithoutALS

I found this to be a thought provoking article in the New York Times sharing the perspective of a wheelchair user.

HOW CAN YOU HELP?
If you are ever at a cocktail party with someone in a wheelchair, find some chairs to place around them so people can sit and chat.  I can't tell you how much it hurts my neck to look up at people!

It seems obvious, but hold doors open (and if you have a friend, two doors open are easier to navigate through over one door).

Don't look at your phone while walking.  People often walk right into me because I have no height!  Especially in crowds.

If you have children, make sure they don't run into our chair, kids often aren't paying attention and when running around don't look and I don't want to crush little feet!

Don't be afraid to offer help, I'm often too shy to ask, but if you see me struggling, I am so grateful to accept your offer!

If you own or attend a business with one or two steps out front (or don't own it but frequent the establishment and want to point it out to management), there are inexpensive portable wheelchair ramps that can be brought out when needed.

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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                     KKG Toronto Alumnae Association
                    138 North Carson St.
                    Toronto, ON M8W 4C8
​

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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.