Tori’s fight for Spinraza
Donation protected
This is my cousin Tori. She is a 4th year student at Ryerson University, an avid concert-goer, and a talented artist. She also happens to have a rare neuromuscular condition called Spinal Muscular Atrophy, which is a disease very similar in nature to ALS / Lou Gehrig's disease disease — it robs her muscles of the ability to do everyday tasks that all of us take for granted such as brushing her teeth, writing with a pencil, and shaking hands with a new friend. Today she is 100% dependent on her motorized wheelchair and only has the use of 2 fingers on her right hand; just enough for her to type on her iPad and drive her wheelchair.
SMA is a progressive disease, which means that Tori’s muscles will continue to get weaker as she gets older. The reality is that she could eventually lose the ability to eat, speak, swallow, and even breathe without ventilator support. It is a scary disease that Tori has been faced with, and as her cousin, it breaks my heart knowing that Tori’s future is so unknown.
In June 2017, however, Health Canada approved the FIRST EVER treatment for SMA, called Spinraza. It is not only proven to stop the progression of the disease, but in most cases, also restore motor function that was previously lost. It is truly a miracle drug and patients that are currently on it are seeing astonishing results.
The problem is that the treatment costs $750,000 in the first year, and $375,000 every year thereafter. To make matters worse, is currently not funded by the province of Ontario for Tori’s type of SMA (Type 2).
Tori’s parents initially made a deal with the drug manufacturer (Biogen) to receive the drug at 50% off under their “compassionate pricing program”. They spent a year re-mortgaging their home, selling their assets and lining up their finances to make this possible for their daughter. However, two weeks before her first dose, Biogen decided they actually wanted full price for the drug — $118,000 per dose.
Tori’s family has already paid for her first 4 doses at this price, but because of the price increase, they do not have the funds to pay for the next 2 doses she needs this year. I have started this GoFundMe in order to raise $236,000, which allow Tori to finish her year of treatments. After that, Tori and her family are hoping that the Ontario government will step up and begin funding Spinraza for everyone, or they will relocate to another province that is already covering it.
Please, please, please consider donating. Every dollar helps and will go directly towards Tori receiving treatment before her disease robs her of the ability to perform another task, like typing on her phone. If you are unable to donate in a monetary sense, please consider sharing this fundraiser with your friends and writing to Susan McGurn (Ontario’s Deputy Minister of Drugs and Devices) on why it’s completely unethical that Ontario deny Tori, and many other Ontarians with SMA, access to life-saving treatment. You can contact her directly at [email redacted].
Please … Tori has her whole life ahead of her. She is a brilliant young lady that has the biggest dreams for her future and truly never stops reaching for the stars, but without treatment, she may never be able to accomplish her goals. Over the past 18 years, her and her family have raised over $1.2 million which has gone DIRECTLY to research in order to find a treatment like this one, but now that it’s here, they are being denied access. She has always been the most selfless person and tries to help everyone else before helping herself. I think it’s time we lend the favour back and give Tori the help she desperately needs.
#torisfight
SMA is a progressive disease, which means that Tori’s muscles will continue to get weaker as she gets older. The reality is that she could eventually lose the ability to eat, speak, swallow, and even breathe without ventilator support. It is a scary disease that Tori has been faced with, and as her cousin, it breaks my heart knowing that Tori’s future is so unknown.
In June 2017, however, Health Canada approved the FIRST EVER treatment for SMA, called Spinraza. It is not only proven to stop the progression of the disease, but in most cases, also restore motor function that was previously lost. It is truly a miracle drug and patients that are currently on it are seeing astonishing results.
The problem is that the treatment costs $750,000 in the first year, and $375,000 every year thereafter. To make matters worse, is currently not funded by the province of Ontario for Tori’s type of SMA (Type 2).
Tori’s parents initially made a deal with the drug manufacturer (Biogen) to receive the drug at 50% off under their “compassionate pricing program”. They spent a year re-mortgaging their home, selling their assets and lining up their finances to make this possible for their daughter. However, two weeks before her first dose, Biogen decided they actually wanted full price for the drug — $118,000 per dose.
Tori’s family has already paid for her first 4 doses at this price, but because of the price increase, they do not have the funds to pay for the next 2 doses she needs this year. I have started this GoFundMe in order to raise $236,000, which allow Tori to finish her year of treatments. After that, Tori and her family are hoping that the Ontario government will step up and begin funding Spinraza for everyone, or they will relocate to another province that is already covering it.
Please, please, please consider donating. Every dollar helps and will go directly towards Tori receiving treatment before her disease robs her of the ability to perform another task, like typing on her phone. If you are unable to donate in a monetary sense, please consider sharing this fundraiser with your friends and writing to Susan McGurn (Ontario’s Deputy Minister of Drugs and Devices) on why it’s completely unethical that Ontario deny Tori, and many other Ontarians with SMA, access to life-saving treatment. You can contact her directly at [email redacted].
Please … Tori has her whole life ahead of her. She is a brilliant young lady that has the biggest dreams for her future and truly never stops reaching for the stars, but without treatment, she may never be able to accomplish her goals. Over the past 18 years, her and her family have raised over $1.2 million which has gone DIRECTLY to research in order to find a treatment like this one, but now that it’s here, they are being denied access. She has always been the most selfless person and tries to help everyone else before helping herself. I think it’s time we lend the favour back and give Tori the help she desperately needs.
#torisfight
Organiser and beneficiary
Teri Anne Lacey
Organiser
Espanola, ON
Tracy Lacey
Beneficiary