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Wednesday, April 17, 2019

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Local family working to raise awareness, support for ALS

Local family working to raise awareness, support for ALS

Various fundraising efforts to take place through November

In April of 2014, Joey Toups of Cut Off was diagnosed with ALS, amyotrophic lateral sclerosis, which is also known as Lou Gherig’s disease. He began to show symptoms of ALS approximately three years ago.

The disease, which is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, has no cure or treatment. The life expectancy of people diagnosed with ALS is typically two to five years from the time of diagnosis. Once ALS starts it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow and breathe, according to the ALS association.

Joey’s wife, Susan Durocher Toups, has thrown herself into fundraising efforts for ALS in hopes that a cure can one day be found so that no other family has to go through the heartbreak of a loved one being diagnosed by this deadly, debilitating disease.

“It’s a death sentence. There is no cure and ultimately no hope for people diagnosed with ALS. My husband went from being a strong, hardworking, independent man to needing me to lift him from his wheelchair to our bed,” said Susan.

ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries and can affect anyone.It costs an average of $200,000 a year to provide the care ALS patients need.

During the summer of 2014, a global social media phenomenon took place. More than 17 million people uploaded ice bucket challenge videos to Facebook and 440 million people watched these videos a total of 10 billion times. During a six-week period, the ALS Association received $115 million in donations.

The Association’s national signature fundraising event, Walk to Defeat ALS, is held in numerous cities across the nation by the Association’s nationwide network of chapters. More than 100,000 people with ALS, their friends, families and the corporate community come together in support of this nationwide effort.

Funds raised by the ALS Association are used to support global research, assist people with ALS and fund certified clinical care centers.

The Louisiana-Mississippi ALS chapter will host their annual one-mile walk on Saturday, October 17 in New Orleans at the Audubon Park shelter 10. Check in begins at 9 a.m. and the walk begins at 10 a.m. The chapter has set a goal to raise $145,000 to support persons with ALS. Free food, music and children’s activities will take place during the walk.

Susan has set up a team, Kajun Joey, and will be hosting numerous events prior to and after the walk in order to raise funds to donate to the ALS association.

A booth will be set up at the Cut Off Youth Center Festival this weekend, September 25 – 27, for anyone wanting information, to sign up for the walk or to make donations to Joey’s team. On September 26, a can shake will be held at the South Lafourche Bridge from 10 a.m. to 6 p.m.

On Friday, October 2, a plate lunch fundraiser will be held at the Cut Off Youth Center from 11 a.m. to 1 p.m. Shrimp spaghetti, potato salad, bread and dessert will be sold for $10 per plate. Advance orders are requested but not required. Deliveries for five or more orders per location can be made if needed. To place an order fax 985-325-7856, call or text 985-696-2379 or 985-291-0170.

At 7 p.m. on October 2, and also at the COYC, a Painting with a Twist-type event will take place. Participants pay $50 and will paint a Louisiana seafood fleur-de-lis. Food and beverages will be sold during the event. To register in advance for the painting party contact Susan at 985-696-8268.

On Sunday, October 4, a cake bingo will be held at the Cut Off Youth Center. Lunches will be sold at noon and bingo will begin at 1 p.m. Cake donations are needed for the event and can be dropped off at noon the day of the bingo.

On Saturday, November 7, a kayak fishing tournament will be held at the Fourchon Boat Launch. More information will be posted nearer to the event on the facebook page Team Kajun Joey.

To donate to Team Kajun Joey or to join their walk team, visit For more information about any of the events, call Susan at 985-696-8268.