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.
It could happen to you, your spouse, your child, another family member, a close friend, a co-worker, someone you knew from elementary school, high school, or college.. but this time it happened to my friend and client for over 12 years -- Mari Winsor, the "Queen of Pilates." Mari 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.
In 2013, Mari was diagnosed with ALS, but, I got the phone call in July 2014, just about the same time people across the world started throwing buckets of ice water over their heads for the ALS Ice Bucket Challenge.
I was driving when Mari called me and had to pull the car over to the side of the road to process this surreal news. It didn't make sense. Mari, who had devoted her life to educating people about health and fitness from the inside out was diagnosed with ALS -- a progressive neuromuscular disease for which there is no cure and that I knew would rob Mari's beautifully fit, athletic, and balletic body of its ability to walk, speak, swallow, and breathe.
The news of Mari's diagnosis traveled fast in the world of fitness. Her friends, family, and the Pilates community all rallied behind her. We believed that Mari could defeat this fatal disease because Mari is a fighter and she made us believe it was possible.
We walked together in the Los Angles Walk to Defeat ALS three years in a row and raised over $55,000 for The ALS Association Golden West Chapter . The 2017 Walk to Deafeat ALS- Los Angeles, will take place on Sunday, October 15th and Team Winsor Pilates will continue to walk.
The Pilates Community also threw two fundraising events in Mari's honor: PAY IT FORWARD FOR MARI 2015 and PAY IT FORWARD FOR MARI 2016 to help Mari cover her added healthcare costs.
Mari's ALS has progressed to the point where she can no longer use her arms or breathe on her own. In November 2016, she underwent a tracheostomy and is currently on full time ventilation and is fed through a gastric tube.
Mari is here with us and we are grateful for that. Though she can no longer speak she communicates by either pointing her beautifully manicured toe on an alphabet board, or by using her new eye-gaze machine TOBII - where she focuses on a letter on a computer key board, spells out what she wants to say onto the computer screen and a computer-voice is generated. Mari has a lot to say — and when you are with Mari her eyes twinkle, her smile fills the room, and her spirits remain high through it all.
The out-of-pocket medical and healthcare expenses are taking a toll on Mari and her husband Elliot. The 24/7 home healthcare is $12,000 a month and this is NOT covered by insurance. Mari already has a hospital bed with lift ($6,000) and a wheelchair, but there are additonal costs, some of which include:
a tub lift
a wheelchair accessible van
home visits by health-care professionals
hospital visits and insurance co-pays
trial drug medications
the list goes on...
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 2017. We will soon be setting up a long-term healthcare fund once we reach our 2017 goal of $250,00. 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.
Mari is the last person who would ask for money, so I am doing it for her. This is a devastating disease -- it need not devastate Mari and Elliot financially, as well.
We want Mari to have the best medical care available. Elliot, Mari’s devoted husband, best friend, and “bunny” is also with her 24/7 providing incredible love and support and we need to support Elliot too, by supporting Mari.
This crippling disease can strike anyone. There is neither known cause nor any cure...
I am asking you to 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.
Many of you reading this know Mari and Elliot personally, but Mari has inspired others through her videos. 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.
Across the United States Pilates instructors and studio owners are holding events like a recent "Mat Class for Mari" held in DC which is raising funds to support the GoFundMe page. We have many fundraising events happening and the $$ raised will go to this GoFundMe page.
We will keep all of you updated when we receive any news of an event and major gifts!
Whoever you are, thank for your gift and please share this with anyone you think can help.