My name is Sam Najjar and I have personally experienced the impact of ALS. Fourteen years ago, my father was diagnosed with ALS, and our lives were changed forever. Watching him face this disease was incredibly hard, but his strength and resilience have inspired me to join this fight.
June is ALS Awareness Month, and I’m excited to share some amazing news with you. The ALS Society of Canada has set a goal of welcoming 30 new monthly online donors, and your support can make all the difference.
Let me tell you more about this offer, and why it makes our community stronger.
A generous board member from ALS Canada has offered to match your monthly donation for the first three months! This means your gift will have double the impact, reaching more families, and funding crucial programs and support like:
- Community and virtual programming, including new wellness workshops that are open to anyone across the country.
- Online support groups that provide comfort and connection.
- The ALS Canada Canadian ALS Learning Institute (CALI), where people can learn about ALS research and advocacy in a supportive environment.
ALS Canada does not receive government funding making them 100% donor-funded. That means every bit of support is only possible because of donors like us. Believe me when I say, this kind of support helps people like my father every single day.
So, let’s unite in our kindness and support for one another. Together, we will work toward a world free of ALS. As a thank you for your monthly donation, ALS Canada will send you a special free “United in ALS” tote bag.
Thank you for being part of our mission with us. Your support means the world to people and families affected by ALS. My father’s memory lives in every monthly donation I make. I know he would be proud of its impact, funding critical research, advocacy, and community support that will lead to a world free of ALS. All you have to do to join me is use this link and make a monthly commitment right now!
United in ALS,
Sam Najjar
ALS took the love of her life in September 2017, but Debbie Caswell’s love for her husband Jamie is still the light that guides her.
This June Awareness Month marks their first wedding anniversary. At the time of the ceremony, Jamie had already lost the ability to eat, speak, and breathe without the help of a breathing assist (BiPAP) machine. His vows were pre-programmed on a communication tablet so when it was his turn to speak, all he had to do was push a button to play the recording. Once the vows were pronounced, Debbie was able to take his mask off and give him a kiss on the lips. “I was so proud to be his wife and so happy to become a part of his family,” she says. “I told him a few weeks before he passed that he was my ‘forever husband’ and I thanked him for coming into my life, for loving me, and for giving me everything I could have ever dreamed of in a partner.”
Debbie and Jamie first met in 2008 through Scouts Canada where they were both active volunteers and in Debbie’s words, “avid Scouters.” They shared a zest for life, a love of nature, and a desire to share that spirit of adventure with young kids. They went on camping trips, travelled to faraway places, and pushed limits. Celebrating their 50th birthdays, tandem skydiving was all part of the thrill. Even after Jamie was diagnosed with ALS, he continued to do Scouting and scratch items off his bucket list for as long as he was physically able. He travelled with Debbie in 2016 to a Scout Jamboree in Finland where they camped among 17,000 youth from all over the world. In March 2017 when Jamie was confined to a wheelchair, he and Debbie rode in a helicopter over the volcanoes on Big Island in Hawaii.
Debbie says that sustaining love and being there to care for Jamie throughout his illness was easy. Maintaining hope was harder. It was Jamie’s courage and persistence to live the rest of his life the best he could that helped Debbie find hope. “He was always an optimist,” she says. “He adopted the idea that he would be the first one cured of ALS and I adopted the idea too even when his children saw that wasn’t going to happen. However, it all happened so quickly. I was hoping for five years and we got barely two.”
Today, Debbie wants to honour Jamie and all those who are touched by ALS. “The fight is not over just because his fight is over,” she says. Since Jamie’s diagnosis in 2016, she has participated in seven fundraising events for ALS Canada including WALKs for ALS in Belleville, Scarborough and Port Perry, fundraising at her wedding and at Jamie’s funeral, the Hike for ALS in Vaughan, and a Polar Bear Dip in Newcastle.
“No one should have to bear the burden of this horrendous disease,” Debbie says. Watching a loved one become trapped in his own body, struggling to clear his lungs and throat many times a day and night for months, like Debbie did near the end of Jamie’s life, she feels compelled to act. “I want to try to walk in Jamie’s footsteps, to try to make a difference in the lives of others like he always did. I want to see a cure for this deadly disease, so I will help in whatever way I can,” she says.
It’s the love you gave that ALS can’t take away. Please pass it on through a gift to support the search for a cure.
A father’s journey
Peter Sharman and his wife, Louise, were on a cruise in the Black Sea when they received the call. Their daughter, Carol, had just been diagnosed with ALS and they were thousands of miles away. Immediately running to the computer, Peter looked up those three letters to see if what he had heard was true – it was. There was no cure for Carol’s diagnosis.
As someone who had already lost a son to a heart attack two years ago, Peter knew all too well what it felt like to lose a child. He and Louise hopped on a plane and travelled back to Canada to face the realities of ALS head-on.
Losing a loved one is immensely challenging under any circumstance. However, the experience of watching his daughter slowly lose the ability to move as her disease has progressed has been emotionally exhausting for Peter, leading to feelings of depression and bitterness.
“Balancing the anger and sadness I feel with being a parent is at times very difficult,” shares Peter. “I used to be full of vigour. I used to be funny. Now I have to pretend to be upbeat around my daughter but inside I’ve completely changed.”
Peter gains strength from watching Carol “embrace her challenges with gravitas” – a testament to her strong-willed and determined personality. Rather than passively accepting the future, Carol has become an ALS Canada Ambassador, sharing her story and championing the cause to raise awareness and funds and advocating for the needs of people living with ALS. Carol was also recently appointed to the PALS and CALS Advisory Council of the International Alliance of ALS/MND Associations.
“Carol has taken this diagnosis and turned it into something positive: the legacy she hopes to leave behind,” says Peter proudly.
From the perspective of a father, the ALS journey hasn’t been easy for Peter. And while he supports Carol at the WALK for ALS and other fundraising events and recently attended an ALS Caucus meeting on Parliament Hill, Peter felt there was more he could do.
In early 2018, Peter published a paper titled “My Daughter has ALS: A Father’s Journey.” Through this publication, Peter hopes to present the ALS experience from a parent’s perspective, raise awareness of the disease, highlight the need for government support and increase the speed of research for a future without ALS.
“Knowing that there is a possibility for research breakthroughs brings me comfort,” he says. “But at the same time, new discoveries run the risk of generating false hope for our family because we know that they won’t save Carol. It’s about the momentum and knowing that we all share the same end goal.”
Through all the challenges that Peter has experienced in the past couple of years, he has also made some positive life changes that benefit both himself and his daughter. For example, Peter and Louise recently moved to Ottawa from Montreal to be closer to Carol and her husband, Travis. This allows them the flexibility to see Carol often and offer support when needed.
They have also made travelling with Carol and Travis a priority — recently, they went on a cruise from Singapore to Tokyo and from the Baltic Sea to Russia.
“Cruises are the best way to travel for someone living with ALS,” says Peter. “The rooms are accessible and Carol can rest whenever she needs to.”
As Carol approaches her fifth year living with ALS (a tentative milestone given that the typical prognosis of the disease is 2-5 years), Peter is reflecting on what he has learned along the way.
“It’s important for people living with ALS to do the things they want to do while they still have the time,” he urges. “And for parents, it’s important to know that your child is still the same deep inside. Carol may be losing her abilities, but she is fortunate to still have her mind. She still has her humour – she’s still my Carol.”
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When you donate today, you’ll have the chance to tell the story of your reasons for giving – as a reminder of the things ALS has taken, but also of the things it can’t.
If you have already given, thank you. We invite you to share your reasons for giving on our Facebook page or by tagging @ALSCanada on Twitter.
This June Awareness Month marks their first wedding anniversary. At the time of the ceremony, Jamie had already lost the ability to eat, speak, and breathe without the help of a breathing assist (BiPAP) machine. His vows were pre-programmed on a communication tablet so when it was his turn to speak, all he had to do was push a button to play the recording. Once the vows were pronounced, Debbie was able to take his mask off and give him a kiss on the lips. “I was so proud to be his wife and so happy to become a part of his family,” she says. “I told him a few weeks before he passed that he was my ‘forever husband’ and I thanked him for coming into my life, for loving me, and for giving me everything I could have ever dreamed of in a partner.”
Celebrating their 50th birthdays, tandem skydiving was all part of the thrill. Even after Jamie was diagnosed with ALS, he continued to do Scouting and scratch items off his bucket list for as long as he was physically able. He travelled with Debbie in 2016 to a Scout Jamboree in Finland where they camped among 17,000 youth from all over the world. In March 2017 when Jamie was confined to a wheelchair, he and Debbie rode in a helicopter over the volcanoes on Big Island in Hawaii.
Today, Debbie wants to honour Jamie and all those who are touched by ALS. “The fight is not over just because his fight is over,” she says. Since Jamie’s diagnosis in 2016, she has participated in seven fundraising events for ALS Canada including WALKs for ALS in Belleville, Scarborough and Port Perry, fundraising at her wedding and at Jamie’s funeral, the Hike for ALS in Vaughan, and a Polar Bear Dip in Newcastle.
As someone who had already lost a son to a heart attack two years ago, Peter knew all too well what it felt like to lose a child. He and Louise hopped on a plane and travelled back to Canada to face the realities of ALS head-on.
testament to her strong-willed and determined personality. Rather than passively accepting the future, Carol has become an