It costs $250,000 a year to provide the care ALS patients need.
Every 90 minutes, someone is diagnosed with ALS (Amyotrophic Lateral Sclerosis) often referred to as Lou Gerhig's disease.
ALS is a progressive disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. As the motor neurons degenerate and die, the brain loses its ability to initiate and control muscle movement. The first signs of ALS can include weakness of hands and legs, twitching, cramping, difficulty chewing, clumsiness, slurred speech, weakness and loss of muscle control, -- and these symptoms are not unique to ALS and can often be misdiagnosed. As ALS progresses, people lose the ability to speak, eat, move their limbs, and breathe. ALS is a fatal disease for which there is no cure.
Mari Winsor, the "Queen of Pilates," who is widely credited with popularizing Pilates with her Winsor Pilates workout series and award-winning infomercials, and making this once-obscure workout accessible to the public nationally and internationally, began to experience some of the symptoms mentioned above for at least a year before she was diagnosed with ALS, in 2013.
Having dedicated her whole life to helping people stay healthy and fit, Mari was determined to fight this disease...and she did...until November 2016, when she could no longer breathe on her own, and underwent a tracheostomy procedure.
Since then, Mari has been on full time ventilation and fed through a gastric tube -- which necessitates 24/7 nursing care, at a cost of $13,000 per month, which is NOT covered by insurance.
The PAY IT FORWARD FOR MARI GoFundMe campaign was set up in February 2017 to help raise funds to cover this crucial, out-of-pocket healthcare cost.
To date we have raised $119,630 -- but now it is 2020 and we need to raise MORE. We need to raise at least $13,000/per month -- that's $156,000 per year.
Mari is the last person who would ask for money, so, I have been doing it for her and her husband Elliot, who is now Mari's caretaker. This is a devastating disease -- it need not devastate Mari and Elliot financially, as well.
Please consider a gift to support Mari with her healthcare and medical expenses. 100% of your gift will go to defray the out-of-pocket costs of Mari’s health care. There are so many ways to raise $$$ -- Many Pilates studio owners across the US have sponsored fundraising events in their studios -- where they hold a one-day event where ALL proceeds go to this GFM campaign. If you have an idea for a Pay It Forward for Mari Fundraiser, please contact me.
This GoFundMe page has been set up so that 100% of funds raised will be used to support Mari’s healthcare and medical needs for this year 2020. Please note that this is NOT a 501(c)3 organization. The gift you make today (and the gift you tell all friends and family to make) goes to the Mari Winsor Healthcare Fund and is NOT tax-deductible.
We will keep this page updated when we receive BIG gifts an any news of a fundraising event and major gifts!
Whoever you are, thank for your gift and please share this GoFunMe page on your social media handles and with anyone you think can help.
(Mari Winsor's longtime PR Representative)
Many of you know Mari and Elliot personally, but Mari has inspired others through her national and international workshops, as well as her many videos with Guthy Renker and then Gaiam. Some of you don't know Mari at all but you may know me, or someone who knows Mari, or you perhaps have been moved by this story.
- Reynalyn Flaris
- Anne McGuinness
Organizer and beneficiary
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