Phil LeMarbre's Battle Against ALS
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On August 15, 2016 our family's world was turned upside-down when our father was diagnosed with ALS.
For those of you not familiar with the disease, you may remember hearing about ALS from Pete Frates and the ice bucket challenge. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As the disease advances, muscles progressively weaken and eventually affect the ability to chew, swallow, speak and breathe. There is no cure and it is 100% fatal. There are around 30,000 people living with ALS at one time because most patients are given 2-5 years life expectancy.
Every 90 minutes someone is diagnosed with amyotrophic lateral sclerosis (ALS) and another person dies from it.
For those of you who know our dad, Phil LeMarbre, you know what an extraordinary man he is. He has been happily married to the love of his life for nearly 40 years, raised 5 children, and is a great Papa to his 8 grandchildren.
Our dad is a jack of all trades. He got his PHD in Biology while raising five children, from there went to the forefront of computer animation 1990s (7th Guest, Johnny Mneumonic, Rolling Stones Voodoo Lounge Tour, etc.), and then to appearences on "This Old House" and renovating our home all on his own.
However, his true passion has been teaching science to high schoolers at Blackstone Valley Regional High School for the past 10 years where he is loved and respected by the students and staff. Unfortunately, due to the onsent of ALS his teaching career has been suddenly cut short and he was forced to take medical leave before this school year began.
Our dad was only 103 days away from reaching his 10 years as a high school teacher. According to the state of Massachusettes, teachers can only get their full pension at the 10 year mark. With this 103 day shortfall, he is no longer qualified for either retirement benefits or health insurance.
There currently is no cure for ALS, but our Dad is a fighter and will not quit. This disease has not robbed him of his passion for his family and for living in general, he's proven an inspiration to us all.
There is a currently an approved drug, Radicava, showning some effectiveness if patients are able to receive it early enough. This was just approved by the FDA in the US. If taken annually for 12 months or 13 cycles, the cost before the govt discount would be $145k. This treatment will not provide a cure, but will hopefully provide us all with more time.
We're reaching out to everyone for their support in this. My Dad is also looking at travelling north for new, promising stem cell therapies in Canada. With all of the new treatments that are coming out everyday that are not covered - this is a very expensive disease and no one is able to fight this alone.
It is estimated that a single year of care for someone with ALS costs $250,000. So, while it may seem like our goal is ambitious, we know that reaching it will only scratch the surface of what we are likely to need. 100% of all funds raised will be used to support our dad's medical needs.
All donations will go to the following: Phil's treatment with Radicut, planned Stem Cell treatment in Canada, constant Dr's bills, equipment, ramps, and the unexpected costs that we know are coming due to this terrible disease.
The only other thing that we can ask is that you keep him in your thoughts and prayers. Most importantly, if you are in the area please feel free to swing in to say "hi" and visit. More than anything, seeing friends and family always gives him that jolt to keep pushing.
Thank you all.
If for some reason any money in this GoFundMe is not used for my Dad’s treatment, it will all be donated to an ALS research fund so we can continue to assist in the search for a cure.
For those of you not familiar with the disease, you may remember hearing about ALS from Pete Frates and the ice bucket challenge. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As the disease advances, muscles progressively weaken and eventually affect the ability to chew, swallow, speak and breathe. There is no cure and it is 100% fatal. There are around 30,000 people living with ALS at one time because most patients are given 2-5 years life expectancy.
Every 90 minutes someone is diagnosed with amyotrophic lateral sclerosis (ALS) and another person dies from it.
For those of you who know our dad, Phil LeMarbre, you know what an extraordinary man he is. He has been happily married to the love of his life for nearly 40 years, raised 5 children, and is a great Papa to his 8 grandchildren.
Our dad is a jack of all trades. He got his PHD in Biology while raising five children, from there went to the forefront of computer animation 1990s (7th Guest, Johnny Mneumonic, Rolling Stones Voodoo Lounge Tour, etc.), and then to appearences on "This Old House" and renovating our home all on his own.
However, his true passion has been teaching science to high schoolers at Blackstone Valley Regional High School for the past 10 years where he is loved and respected by the students and staff. Unfortunately, due to the onsent of ALS his teaching career has been suddenly cut short and he was forced to take medical leave before this school year began.
Our dad was only 103 days away from reaching his 10 years as a high school teacher. According to the state of Massachusettes, teachers can only get their full pension at the 10 year mark. With this 103 day shortfall, he is no longer qualified for either retirement benefits or health insurance.
There currently is no cure for ALS, but our Dad is a fighter and will not quit. This disease has not robbed him of his passion for his family and for living in general, he's proven an inspiration to us all.
There is a currently an approved drug, Radicava, showning some effectiveness if patients are able to receive it early enough. This was just approved by the FDA in the US. If taken annually for 12 months or 13 cycles, the cost before the govt discount would be $145k. This treatment will not provide a cure, but will hopefully provide us all with more time.
We're reaching out to everyone for their support in this. My Dad is also looking at travelling north for new, promising stem cell therapies in Canada. With all of the new treatments that are coming out everyday that are not covered - this is a very expensive disease and no one is able to fight this alone.
It is estimated that a single year of care for someone with ALS costs $250,000. So, while it may seem like our goal is ambitious, we know that reaching it will only scratch the surface of what we are likely to need. 100% of all funds raised will be used to support our dad's medical needs.
All donations will go to the following: Phil's treatment with Radicut, planned Stem Cell treatment in Canada, constant Dr's bills, equipment, ramps, and the unexpected costs that we know are coming due to this terrible disease.
The only other thing that we can ask is that you keep him in your thoughts and prayers. Most importantly, if you are in the area please feel free to swing in to say "hi" and visit. More than anything, seeing friends and family always gives him that jolt to keep pushing.
Thank you all.
If for some reason any money in this GoFundMe is not used for my Dad’s treatment, it will all be donated to an ALS research fund so we can continue to assist in the search for a cure.
Organizer and beneficiary
Stephen LeMarbre
Organizer
Hopedale, MA
Philip LeMarbre
Beneficiary