Category: Fundraising

My name is Mehboob, and I’d like to share my story with you. And I want to say thank you.

In late 2020, life took an unexpected turn when I was diagnosed with ALS. Once the provider of medical care as a family physician in the community of Stoney Creek, Ontario, I found myself in need of care and support.

ALS, as many of you might know, is a relentless adversary. The speed with which it operates can be overwhelming. But the journey I embarked on has become one not of despair but of hope and inspiration.

I have learned to accept this journey that I am on. This disease is a rare one, and while I still can, I will do everything in my power to raise awareness about what it is like for families like mine and what we are going through. Like the needs we have. The costly aspects of this disease – so much care and equipment are required, which is not cheap. The emotional toll it takes on our partners – like my incredible wife Sophie, who I love with all my heart.

Some of you may remember the ALS Canada Walk to End ALS event earlier this year. I had the honour of leading our team, “Marching for Hope.” Together, we raised close to $15,000 for ALS research, and I pledged to match a part of those funds personally. But the Walk was not just about funds; it was a statement – a statement that despite the odds, we would stay strong, we would press forward, and most importantly, we would hope.

Today, nearly six months later, I reflect upon our journey together. Despite the hurdles – the wheelchair, the physical setbacks, the emotional challenges – there’s been an incredible force of good around Sophie and me. And this force is a daily reminder that there is so much we can still do. Your support, your words of encouragement, and your unwavering belief have been the wind beneath our wings. Thank you for supporting ALS Canada. Thank you for supporting me.

I’ve always believed in the power of community. In my years as a physician, and now, more than ever, as a part of the ALS community, I’ve witnessed what collective compassion and commitment can achieve. Every day, my heart is warmed to know I am not alone – you and the rest of the community are right here with me. Thank you.

It’s not just about fundraising but about creating awareness, providing support, and, most importantly, showing that we’re in this together. Every message, every phone call, every tiny gesture has had a profound impact on me. And it’s these collective efforts that hold the promise of a brighter future for everyone affected by ALS.

So, as we journey forward, remember this: your involvement, commitment, and heart have made a difference. You’ve given me, and countless others, strength and hope.

From the bottom of my heart, thank you.

Warmly,

Mehboob

Diagnosed with ALS in 2020

P.S. Our mission is an ongoing one. While we’ve achieved much, there’s still a road ahead. If my journey resonates with you, and you feel the urge to support further, please consider donating here. Your contribution, no matter how small, changes our world.

Canadians unite. August marks the one year anniversary of the ALS Ice Bucket Challenge. The premise of the Challenge remains intact – Canadians can dump buckets of ice and water over their heads and challenge three people do the same and donate to an ALS Society across Canada. In respect for the environment, Canadians are encouraged to either save the water or use recycled water when getting involved this year.

Amyotrophic lateral sclerosis (ALS) is a terminal neurodegenerative disease in which motor neurons or the ‘living wires’ that connect the muscles to the brain degenerate, robbing the person living with ALS the ability to walk, talk and eventually breathe. There is no effective treatment or cure and most people will die within two to five years. ALS is indiscriminate of age, ethnicity or sex and only 5-10% of people diagnosed will have a hereditary link.

“The funds and awareness raised from the ALS Ice Bucket Challenge replaces discouragement with some reassurance that the ALS Community is not being overlooked and allows hope to sprout that a treatment or a cure is one day possible,” said Brian Parsons. “That’s why we have to keep doing the ALS Ice Bucket Challenge this August and every August until a cure.”

Last year Canadians donated $17 million to ALS Societies across Canada. From these donations $11.5 million was allocated to ALS research and $4.4 million to help people living with ALS across the country. Additionally Brain Canada responded to the generosity of Canadians by matching $10 million from the ALS Ice Bucket Challenge funds. ALS Canada has active competitions underway which will see almost $15M invested in 2015 for grants, awards and research support as a result of the 2014 ALS Ice Bucket Challenge, a partnership with Brain Canada and annual fundraising initiatives. Further investments are underway for equipment and services which will provide support for people living with ALS and their families throughout Canada. This is an unprecedented investment, but a drop in the bucket compared to the need.

“We are so grateful to Brian and Pat and the ALS Community for their challenge of ‘Every August until a cure’ and bringing forward the ALS Ice Bucket Challenge into 2015,” states Tammy Moore, CEO ALS Canada. “The financial burden of $150,000 – $250,000 is massive for families and the ALS Societies across Canada do much to provide support for the 2500 to 3000 Canadians through the provision of equipment and support services for people coping with the disease. Approximately one thousand people in Canada will be diagnosed this year and the same number will die. We need research to change this reality. The ALS Ice Bucket Challenge may help to change the future.”
Canada, consider yourself Challenged.

The public can donate to ALS Societies across Canada at alsicebucketchallenge.ca.

$17 million was raised through the ALS Ice Bucket Challenge in 2014.

ALS Research:

• $11.5 million went to ALS research from ALS Societies across Canada
• We have seen a 70% INCREASE in grant applications through the ALS Canada Research Program
• By October 2015 $12.9 MILLION to be invested in research grants and programs

Client services:

• $4.4 million went to client services across Canada
• Each provincial society directly supports clients living with ALS in their communities

Processing fees

• 6% to administer the ALS Ice Bucket Challenge

Increased awareness of ALS through the ALS Ice Bucket Challenge resulted in:

• $10 million matching grant for research by Brain Canada
• April 21, 2015, the Government of Canada announced that the compassionate care benefit (CCB) may be  extended from six to 26 weeks. It was announced in the budget for an anticipated implementation in 2016.  If the Government of Canada implements the extension, caregivers may have up to $13,624 they can access, where previously it was $3,144.