On December 17th we gather to show the world that our cures are linked. That if we cure ALS, we can help unlock critical breakthroughs for Alzheimer’s, Parkinson’s, Multiple Sclerosis, and beyond. That together we can change the world.
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On December 17th we gather to show the world that our cures are linked. That if we cure ALS, we can help unlock critical breakthroughs for Alzheimer’s, Parkinson’s, Multiple Sclerosis, and beyond. That together we can change the world.
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 Travis & I started dating when we were living on the island of St. Maarten in September 2003. Less than a month later, we took a catamaran ride for my birthday with friends. Only a select few knew we were dating, as we had been friends for years so being in a relationship was brand new. Captain Dave let me steer the boat and as we hit a wave, I fell and hit my head. Head wounds are notoriously bad for bleeding, it wasn't pretty. Travis stayed by my side to make sure I was okay, which outed our relationship as more than friends! We never could have imagined that 10 years later, I would be diagnosed with ALS and what the weight of the words we said to each other at our wedding "in sickness and in health", would actually mean. November is National Caregiver's Month, and more importantly, Travis' birthday! I think that people try to imagine what it must be like for him, grieving for a wife with a terminal illness, working full-time as a chef in one the most stressful industries as a profession, and coming home and dealing with everything, shopping, errands, home maintenance, caring for me, etc. But of course no one can really imagine the stress and weight of it all without living through it themselves. Being diagnosed with ALS is the worst fate I could imagine for myself. I wouldn't change a thing if it meant having Travis in my life. Not once has he made me feel like a burden (which everyone living with ALS fears). Every day he makes me feel loved, he makes me laugh, he gives me hope and he takes everything in stride. Travis Timothy Skinner is my soulmate and I am so grateful for him it makes my heart burst.   Show Appreciation to a Caregiver During National Family Caregivers Month November is National Family Caregivers Month. Join The ALS Association in honoring caregivers throughout the month. “Being a caregiver of someone with ALS is incredibly challenging, and my role hasn’t even begun to be that physical yet,” said Jen LeVasseur. Her husband, Noel, was diagnosed with ALS in 2017, just over a year after they were married. According to a 2018 report from the National Alliance for Caregiving, primary caregivers are often family members or partners who spend up to 11 hours a day with the patient. Caregivers reported high levels of financial strain and emotionally stress. A 1999 study showed that people who experience caregiver strain have higher mortality rates. “A lot of people will say, ‘How do you do it? How are you doing today?’ And I know they mean well, and then when they say, ‘I wouldn’t be able to do it if I were you,’ and I look at them and I say, ‘Yes, you would be able to do it if you were in my role,’ because you have to. What are your choices? You have to take care of that person. You wouldn’t be able to live with yourself if you didn’t. And you just take one day at a time,” LeVasseur said. Because caregivers are crucial to the lives of those living with ALS, it is essential to prevent ALS caregiver burnout. The ALS Association recommends that family and friends of caregivers make a periodic effort to provide respite care for caregivers. Respite care is simply a period of rest or time away for an activity that will bring pleasure to a caregiver. Respite care is also a way to show say “thank-you” for the exhaustive work that they do. Eighty-four percent of caregivers help their care recipient with medical or nursing tasks. Simply giving the primary caregiver a break from his or her responsibilities by taking a day to help with these tasks can take a load off of a caregiver. Preparing a meal, getting groceries or helping with car maintenance like an oil change can also be very helpful to a tired caregiver. Chores or errands that seem insignificant to others can become a burden to caregivers who provide around-the-clock assistance to a loved one with ALS. Respite care activities can also be a leisure activity such as a trip to the movie theater or dinner at a favorite restaurant; even a community event like a museum exhibit or festival can provide a welcome change – anything that they would enjoy or gives them a reason to smile. Simply letting caregivers know that you are thinking of them, and that you appreciate them can make a world of difference. Caregivers can feel taken for granted at times, and a sincere gesture of appreciation no matter how large or small makes a difference. A simple phone call or greeting card of appreciation or thanks. Throughout the month, The ALS Association will be sharing the stories of some of the caregivers in our community. In the meantime, find a caregiver in your community. Thank them. And ask them how you can help.    Thank you to the Living Loving Laughing Walkers who were a huge part of making this happen! I am so proud and grateful to have you in my life! Not only are Canadians incredible, but thanks to my lovely family on the other side of the world who participated in the New Zealand Walk 2 D'Feet MND  Mom and I participated in the annual New Zealand version or the ALS walk this morning. The walk is held simultaneously in all major centres around New Zealand. Only got to hear about it last week form a radio advertisement, but will be more proactive next year when it comes around. Wore your T shirts Carol, rather than getting and using their blue coloured ones. Glad we did, made ours feel distinctive and gave us the real sense of connection with you. I couldn’t help but feel the emotion of it. We were led off by a piper who started with ‘Amazing Grace’ Chatted to a lady along the route whose husband was diagnosed 6 months ago. He was working as a flight attendant. Had intended to take photos along route but my iPhone battery died and we asked a young lady to take a few pics for us. We asked a few of her team mates to pose as extras in the background so you could get a sense of the event with their blue shirts. (the writing on their shirts was a bit too fancy, hard to read what it says. Plan and simple writing works best) Three Company MD's/CEO's were there, taking part in a corporate ice bucked challenge. They collected $40,000 between them. One guys wife was the poured the bucket over him, doing it much slower than the others had had, seemed to take pleasure in making the pain linger. Delightfully chilly/painful look on his face 😬😜 Much love Dad + Mom   Canadians have a Federal Election coming up on Monday October 21. It is decidedly embarrassing our low voter turnout in this country. My husband comes from a continent where many people have died to have their right to vote. To me, voting is a right, a privilege and a necessity to fight for democracy. I am proud of our country and all I ask for my upcoming birthday is for you to VOTE! If you don't vote, you have no right to complain about government policies. With the 2019 federal election campaign underway, are you curious about what the parties are saying about the issues that could affect Canada’s ALS community? ALS Canada asked each of the major parties what they would do to, if elected, to help people and families affected by ALS. Specifically, we asked them about how they would improve equitable, timely and affordable access to proven ALS therapies and patient engagement, provide dedicated ALS research funding, and implement a palliative care strategy. As you go to the polls on October 21, we hope this blog post helps inform you about the issues affecting people and families living with ALS. Read each of the party’s responses below to learn more. ALS Canada would like to thank the parties for their participation and responses. *NOTE: All responses are directly from the parties. ALS Canada did not edit or change the responses in any way. Click the link below to read party responses:   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 tell me, who is humming the song in their head?  Algonquin 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. And with our upcoming election, continue to push for our Government to invest in ALS research funding. Each year ALS Canada develops a pre-budget submission as part of the Federal Budget consultation process led by the House of Commons Standing Committee on Finance. Each submission has focused on the need for direct ALS research funding, including calling upon the federal government to support CAPTURE ALS and Project MinE. To keep ourselves honest, we are definitely not celebrating today, however, we are addressing and acknowledging it. I am going to therapy while Travis is at work, to deal with the emotions associated with reliving the day of my diagnosis. And we are going out to dinner because we deserve it.
 Tea for Two celebrating Chelsea & Eric's wedding  Visit with timeless Kanawanian friends Deb & Adrian
 Or Join us at the Hike by clicking the link below 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.  Congratulations to the Living Loving Laughing Walkers and their supporters who raised a whopping $24,390 for the ALS Society of Canada at the 2019 Ottawa Walk to End ALS! 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.
ALS Awareness Campaigns Across Canada: British Columbia:  The month of June 2019 has been proclaimed by the Province of British Columbia as “June – ALS Awareness Month in BC”. On June 1st, BC landmark buildings will light up in the ALS colour purple to show support for people living with ALS. Over 100 events are planned to be held in British Columbia during the month to raise funds to support ALS patient care and research. ALS Society of New Brunswick and Nova Scotia:  Flag raising with Mayor Savage and Bill Duff for ALS NB & NS and the charitable sector overall in Halifax. June is ALS Awareness Month. Help ALS NB & NS in our work to make sure that people living with ALS can continue to do so boldy, strongly, courageously. Toronto:  The CN Tower was lit in purple on June 1, 2019 in honour of ALS Awareness Niagara Falls:  After the Niagara region #WalkToEndALS and in support of #ALSAwarenessMonth, Niagara Falls will be illuminated in purple, starting at 8:45pm on June 8th! Help increase #ALS awareness by sharing your photos Ottawa & Canada: 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.   I had the good fortune to be contacted by Jenni Berebitsky's Publicist Lauren, asking if I would be willing to review her memoir "ALS Saved My Life...until it didn't" on my blog. I felt a remarkable connection to Jenni as she was also diagnosed younger than most, studied art therapy, visited Italy as a "must do before I die" reaction to her diagnosis, has more than surpassed her prognosis, shares my passion for sunflowers, attends ALS walks every year with her supporters, and is also a strong advocate for furthering ALS research. This book resonates with my journey of trying to find the balance between "showing up vs. giving up", while allowing the occasional pity party. I felt not so alone in the difficulty of learning to ask for and accept help, as well as how it feels to lose control. Jenni shares practical tips and tricks in managing ALS as well as how to address the emotional, mental and physical aspects of living with illness. There are chapters written by family members and friends, offering a perspective for others to navigate their roles of a loved one's terminal illness. Travis appreciated the one written by her husband, accepting the reality of needing to look after oneself in order to care for your partner. He especially enjoyed when Jenni's husband stated "she can be a real s*** sometimes", a little too close to home! Jenni shares her secrets to living life to the fullest in the face of life-altering events in her debut book. With humour and vulnerability, Jenni offers practical resources and advice on what ALS patients and their families can expect as they embark on their own ALS journeys. She also offers guidance for how she manages to live with continuous hope and positivity. Jenni's journey as an ALS warrior provides the secrets to living a full life after a terminal prognosis, and she details the good, the bad, and the ugly of her ALS journey with charming wit and honesty. Jenni's book serves as a hopeful guide to all readers for how to move forward in the face of life-altering events. This year, Jenni is releasing the audiobook version of her memoir, and her documentary, "Grateful: The Jenni Berebitsky Story", is being released and screened in film festivals across North America.       The Living Loving Laughing Walkers are back at it! We are excited to participate in the 2019 Ottawa Walk to End ALS on Saturday, June 8th. We would love to have you join us, sponsor us or wish us a great day! Your continued support means the world to not only my friends and family but our beloved ALS Community as a whole. Living with ALS can be frightful and lonely, but events like these lift our spirits and our hope. 
  After Carol was diagnosed with #ALS, she began sharing her journey on her personal blog.
It started as a personal journal and has turned into a resource for others living with ALS where people go to learn “helpful hints in managing ALS,” while also facilitating connection-building. Thank you for your strength and dedication to bringing about #ALS awareness and for fostering a virtual ALS community. Your impact as an ALS Canada ambassador has been tremendous and we truly enjoy supporting your efforts. Your ability to support others living with #ALS to feel inspired and understood during their journeys is a beautiful thing. #NVW2019 Learn how you can make a difference by getting involved: https://bit.ly/2VDpi8D  On March 19th, 2019 Finance Minister Bill Morneau tabled the Canadian federal budget. Sadly, the promise of Motion 105 was again NOT KEPT. Exactly $0 was allocated towards ALS. When M-105 was passed unanimously in 2017 I was eager for the 2018 federal budget. I was shocked and appalled when there were no targeted funds for ALS research, I mean, they promised (yes, I know how naive that sounds). My spirits were lifted after attending a few ALS caucus meetings in parliament, yes there are ministers that do seem to care. My friend Eddy & I thought we could not stand by and let them do this to us again so we developed the MP letter writing campaign in which over 2300 of you sent letters to our government. Also, despite M-105 stating that our government would "develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity", they did not, so ALS Canada did with CAPTURE ALS. We did everything in our power to encourage our government to keep their promise and they disappointed. I can't say that I was surprised, but I did have a smidgeon of hope. Instead I was left dejected and feeling like a failure. It is hard enough to keep going with this unfathomable disease, and false hope from politicians who pretend to care feels like another weight I cannot bear. To hell with them. As Winston Churchill said, "Never, never, never give up". My dad survived the Battle of Britain, so he is living proof! We are going to find a way to do this ourselves. My dad serves as a great example as he approached his bank and because of that CIBC will be sponsoring this years Ottawa Walk to End ALS. As the GM Anthony stated, "because of Mr. Sharman’s passion for this cause and his ability to connect us with the right people in your organization that CIBC will be moving forward with a sponsorship for the local Ottawa Walk". The federal budget did include an investment in the Brain Canada Foundation, which has the ability to allocate funds towards CAPTURE ALS, though there are no guarantees. ALS Canada has had a partnership with them in the past so perhaps reaching out to them will promote ALS research. Other fundraising opportunities include Bloomex Florist, Orangetheory Fitness, Smart & Biggar's Trivia Night and of course the upcoming walk season! To end on a heartwarming, tear inducing note, my beautiful cousin Chelsea and her fiancé Eric, are also donating to ALS Canada as part of their wedding!  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  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  Looking forward to Smart & Biggar's Trivia night with donations going to ALS Canada at the Lieutenant's Pump in Ottawa on April 18th. Will you join us for some competition? If there are any questions on 80's bands, I will kill it!  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  The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and Eddy in this initiative, yet sadly, Eddy died in January 2019 before he could see the results of his initiative. To support the efforts put forward by our community, we have sent a letter to Health Minister Ginette Petitpas Taylor explaining why the federal government must play a role in supporting ALS research. The letter outlines federal investment in ALS research to date, along with an analysis based on our own fact-checking, to illustrate the ongoing need for sustainable and direct ALS research investment.     I found this to be a thought provoking article in the New York Times sharing the perspective of a wheelchair user.  A doctor examining the feet of the author. A lack of sensation can lead to injuries.CreditCreditPhotographs by Nolan Ryan Trowe    At the West Fourth Street basketball courts in Greenwich Village. 
  Police officers carrying the author’s wheelchair at the Utica Avenue station on the A line, where the elevator was out of service.   Union Square subway station.   A car too crowded for a wheelchair.
   A passenger holding the door of the elevator open at the 34th Street-Penn Station subway stop.  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. Just a few ideas off the cuff, please send me your ideas or questions!
 A big thank you to everyone who took part in the recent online MP letter-writing initiative. Over 2,375 Canadians sent emails to ask the federal government for dedicated ALS research funding. Many of you also sent personalized good old-fashioned letters which are also much appreciated! Together we are stronger. Now let's see if they honour their promise of Motion-105 in the upcoming Federal Budget! #CaptureALS #ALSResearchMatters Let ALS stand for ALL LIVES SAVED!!!   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.     Travis & I wanted to take this opportunity to thank you for being a part of our lives xoxo    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: Capture ALS is a project that is capable of saving THOUSANDS of Canadians that are DYING from ALS through mapping the Genome of every Canadian Living with ALS. By doing so researchers and doctors will be able to develop new medicines and treatments to cure ALS. Please show your support to those who suffer from ALS by clicking the link als.good.do/captureals/emailyourMP/ which will allow you to email your Member of Parliament to inform them how important a cure for ALS is.
 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...). Crown Gallery
 Hudson Valley ALS Walk 2016
 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 |
AuthorCarol Jean Skinner (née Sharman) Archives
November 2019
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