May is ALS Awareness Month
Mid-May, thousands of ALS advocates descend on Washington DC for an ALS Advocacy Conference and to meet with our Congressional leaders to raise awareness and Federal funds for the Care & A Cure of ALS.
In 2013, Mari Winsor, lovingly known as the “Queen of Pilates” was diagnosed with ALS, also known as Lou Gehrig’s disease a neurodegenerative disease where one lose the ability to move, speak, swallow, eat – and eventually the ability to breathe. In November 2016, Mari underwent a tracheostomy and now breathes with the help of a machine.
Our courageous Mari is a fighter. With the help of TOBBI an amazing state-of-the-art eye gaze machine, she continues to communicate by phone and email. Here’s a link to a recent video of Mari using her eye gaze machine.
Mari needs 24/7 home care from a registered nurse which costs $12,000 per month and is NOT covered by health insurance. In honor of May’s ALS Awareness Month and to raise funds to defray the costs of Mari’s healthcare not covered by insurance an online auction has been created through BiddingForGood.
BiddingForGood — www.biddingforgood.com/
This online auction runs until May 31st — throughout ALS Awareness month. There are many one-of-a-kind celebrity experiences including:
*Lunch with Academy Award Nominee Melanie Griffith
*Lunch with Sherry Lansing, Former Chairman of Paramount Pictures
*A signed replica of the Michael Myers mask from the movie Halloween by all the cast and crew from Jamie Lee
*Gratz Cadillac donated by David Rosencranz
*Balanced Body Pilates equipment – Cadillac, Reformer, Wunda Chair, Ladder Barrel from Melanie Griffith’s Private home gym (all in pristine condition)
I personally had Mari’s original Pilates DVDs and have respected and looked up to her for a long time. She is an incredible Pilates teacher and an amazing woman. I admire her determination and attitude and can only hope we can help support her and continue raising funds for ALS sufferers everywhere.