Phil LeMarbre's Battle Against 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.
#PhilsArmy would like to thank everyone for the unwavering support and generosity through this trying time. He found so much joy in reading posts and well wishes and connecting with all of you. His infectious joy and positive attitude will be sorely missed.
The funeral will be held on Tuesday, August 1st, at 10:00AM at Sacred Heart Church, 187 Hopedale Street in Hopedale. Burial will follow immediately. Calling hours will be on Monday, July 31st from 5:00-8:00PM at Consigli Ruggerio funeral home, 46 Water Street, Milford.
In lieu of flowers, any expressions of sympathy may be made in his memory to CCALS, P.O. Box 1052, West Falmouth, MA 02574 https://www.ccals.org/you-can-help/donate/
"Keep the faith, follow your instincts, and trust in the Lord"-Phil
All remaining funds, and any further donations, will go directly to ALS specific charities (CCALS, ALS ONE, etc.). We truly appreciate all of your support.
Please make a trip to your Equal Employment Opportunity Commission. This is in violation of American with Disabilities Act. ALS is a permanent disability and if your atty never handled an ADA case he may not know. My company did this to me and they were found guilty of all charges. Please get good representation. The EEOC will handle it all the way to Federal court. You really don't even need an employment atty. Prayers your way ♥
I just watched your story on Greater Boston. My heart is broken for you and your family. Where is the compassion? My brother passed away 4 years ago from ALS. I lived with him, his wife and twin 10 year old daughters for the 2 last months of his life. I was humbled by his grace and dignity in facing this ugly disease. We were blessed to be associated with ALS Association of Greater Philadelphia. They had a "closet" where my brother could get a lot of adaptive equipment for free as long as they had it available (wheelchair commode, shower chair, Hoyer lift, etc.) I don't know about MA, but if you have not already looked for a lending closet, perhaps you could do so. Every year, I donate to the ALS Association of Greater Philadelphia. This year I am going to donate instead to "go fund me" for Phil. I know it's just a drop in the bucket, but every little bit helps, right?! God bless you all and remember to breathe!!
My father passed away 6 years ago from ALS. I moved home with my husband and our daughter to care for him. I thank God everyday for that incredible time I was allowed with my father. Is you Dad a veteran? If he is his disease will be covered 100% by the VA. All medical, equipment and a disability income is provided as ALS has been accepted by the Government as a condition that is linked to servicemen/women that served in the military, regardless of whether you served during time of war. Compassionate Care ALS is also a wonderful organization that can help out both financially and mentally. Ron Hoffman is incredible. I did a golf tournament fund raiser when my Dad was sick, I donated all proceeds to CCALS, but a fundraiser for your Dad would be great as proceeds can go directly to your Dad and it is a great way to raise awareness. If I can be of any assistance please do not hesitate to reach out. Prayers being sent to your Dad and family. My best advise to the family is regardless of the situation always act like everything is normal, as it lessen the burden they feel that they are placing on others. Godspeed, Andrea Allen
I'm so sorry to hear about your father's diagnosis. I am very sorry, I'm not in a position to help financially, however I do have some information. There is a government program FMLA Family Medical Leave Act. If your dad has good days and bad days, this Act would require that the school allow him to be approved for unpaid time off as needed due to health. (It is also available intermittently as needed). There are a few stipulations 1. the employer must have more than 50 employees 2. the employee must have worked more than 1250 hours in the last year 3. if your dad was considered as an independent contractor, he could be exempt, however, if he received a check with taxes taken out of it and receives a W2 each year, this would be considered employee status even if he gets a contract each year. I'm not sure what type of attorney he saw, but an labor law or employment attorney would know the specifics of this government program. The FMLA paperwork only requires a statement from the doctor that diagnosed him with ALS and the doctor completing the form with the limitations he has that makes it hard for him to complete his job. I hope this helps. Good luck and I will keep you in my prayers.
My father died of ALS. It was devastating to watch this disease ravish his body. God bless your father.
You gave my daughter wonderful gifts. She suffers from challenges and you instilled confidence in her and helped her to believe in herself. I can't thank you enough. I will pray for you daily and I work with Sisters. I will ask them to pray for you daily. Know you are loved.
I am so sorry for your family's loss after this tough battle. ALS is a terrible disease and we can only hope that someday we find a cure. Our thoughts are with you during this difficult period.
I remember your dad from when we were in the Eliot (elementary) School and Coolidge Junior High. He was a smart, sweet kid and I'm not surprised he grew up to be a wonderful man. What a great family he and your mother created. I'm happy to contribute and I'm encouraging others in our class to do the same. Tell him Pat Kannel says hello!
So sorry to hear this when our children's school district had a similar situation other teachers were able to donate days . Can someone look into this possibility please!?
Thank you for being such an awesome teacher to our son Justin he really enjoyed you as a teacher. Keep fighting. Our thoughts and prayers are with you.