ALS is a degenerative motor neuron disease that leads to progressive muscle weakness and damage to nerves in the brain and spinal cord. Patients slowly lose their ability to use and control all of the muscles in their body, including those needed for speaking, eating, and breathing, until they become completely paralyzed. However, their cognitive functioning often remains completely intact. Imagine slowly, over 3-5 years becoming completely paralyzed, trapped in your own body. You feel an itch and are unable to scratch it. You have something to say but are unable to say it. This is life for an ALS patient.
The reason that I am creating this GoFundMe page is because my mom has an exciting opportunity to receive a new treatment! The drug Edaravone (you might know it from the news as Radicava) was approved for use in ALS patients in the US last May. The first ALS drug to receive FDA approval in over 20 years! The drug is also available in Japan (where it was created, trialed and approved for patient use). Unfortunately it has not been approved yet by Health Canada (don't worry we have been writing to the Health Minister and our local MP's about that!). Patients on Edaravone can hope for a slowing in the progression of their disease. It is not a cure and cannot reverse damage however; our hope is to slow the disease down until another more impactful drug/treatment is available. In fact, there are several, including stem cell therapy that are very close to meeting clinical trial endpoints thanks to the Ice Bucket Challenge of 2014. The money raised by that challenge has led to major breakthroughs in understanding this devastating disease, diagnosing it, and of course looking for treatments. It has been suggested that by 2024, ALS will no longer be considered a "terminal" disease but rather a "treatable" one!
Since Edaravone is not available in Canada we have to source it elsewhere. With the support of Sunnybrook Hospital and Health Canada, we are able to import the drug from Japan. We can receive, what works out to a 6-month supply in one shipment. Unfortunately, the drug is costly and is only administered via an IV. Since Edaravone is not officially a "Health Canada approved drug”, OHIP will not cover the cost of having a nurse administer it. That is up to the family to pay for at $225 a visit. The treatment cycle is 10 days on and 10 days off, so basically this will cost my parents roughly $2500 a month JUST to have it administered. The drug itself costs roughly $3500 CAD. Our target/goal in this fundraiser if reached, would cover my mom's treatment for 6 months.
Many of you have asked many times what you can do to help. You have been incredible in supporting us. It is not easy to ask people for money, but we are hoping to offset even SOME of the costs so ANYTHING helps!! Please share this with as many people as you can. If you can't donate then please share our story. We need to raise awareness about ALS and about the limitations of our Health Care System. If nothing else, please share it to offer hope to others that no matter how bad things seem there is ALWAYS hope!
It is difficult to put into word just how grateful I am for your support. On behalf of my family, from the bottom or our hearts, thank you!
Susie and family
- Irena Cescon
- Irena Cescon
- Richard/Georgina Kearney
- Shivana Bissoon
- Voula & Clayton Freeman
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