“Living As An ALS Advocate” Chapter 94

When I retired, one of the first things I did was change my LinkedIn work title. First, though, I had to had to narrow down my options:

• “Dallas Cowboys Fan for Life...” although cool, it’s only appealing to half of the world.

• “The King of ALS...” nope, nobody wants to be that.

• “ALS Assassin...” I really liked that one, but it was a bit misleading.

• Finally I decided on “Living with ALS Blogger/Advocate.’

I had been writing my blog for about two months at this point, and was pretty dedicated to it. The blog has become my mission and way of sharing my ALS journey while keeping my voice, even if it was only in written form. So “ALS Blogger” felt right.

I have always volunteered and advocated for various programs and issues in my life, but those causes were never something I dedicated my entire life to. Think about it, how many times have you participated in something but only had one toe invested? We have all been there. It’s not until something affects you personally do most people become a true Advocate, and now that I'm living that reality, I completely understand the investment. So I felt the title of “ALS Advocate” was fitting.

Over the past three years of blogging and Living with ALS, I have met many ALS advocates, and I wanted to take a moment to highlight a fellow ALS advocate who recently posted her own thoughts on being an Advocate. Cloie is Rocky’s wife/caregiver who is also LIVING with ALS. Together they stand by their mantra “Not Today ALS,” and stand strong in their faith in God and Love for each other:

Become an Advocate

My husband and I are deeply committed to finding a cure for ALS. This mission is incredibly personal for us, as my husband Rocky, is currently battling the disease. Rather than feeling helpless, we've decided to channel our energy into actively advocating for the ALS community and supporting the nonprofit organizations that provide essential support.

We're passionate about making a difference, not just for Rocky, but for everyone impacted by ALS. Instead of succumbing to despair, we're determined to create a positive impact. We know that a cure might not come immediately, but investing in research and support now will undoubtedly benefit future generations. It's this hope and determination that drive us every day.

Rocky & Cloie💙

Like Rocky & Cloie, my family and I - “Mission DuBois” - are also on a mission to #EndALS. On 8 August we participated in the third annual DC ALS CEO Soak event by the ALS Association. I am proud to say I have been the top fundraiser for this event all three years.

The CEO Soak was inspired by the ALS Ice Bucket Challenge, and it has quickly grown to become one of the premier corporate engagement opportunities and entertaining events for the ALS Association. The CEO Soak engages community leaders to get soaked once again for ALS while raising critical funds and awareness for the ALS Association’s mission.

This year was also the 10th anniversary of the Ice Bucket Challenge. The single largest event helping the fight to end ALS. Even though it rained this year, that didn’t stop 13 people from getting soaked while raising over $31,000.

I was soaked myself the first year, however, my daughters Corina and Chantelle stepped up the subsequent years since being in a wheelchair makes it impossible for me to personally participate. This year was extra special because Mikea, a Fox 5 DC reporter was the emcee and the event was also on the news, which allowed more people to learn a little more about ALS. Events like this being highlighted on the news really helps the cause. More importantly, the ALS Association ensures all of their events are fully accessible, which allows myself and other PALS to fully participate and advocate on our own behalf to end ALS.  They are not just checking the blocks either. I have been contacted several times for input to ensure our special needs are considered/met for events.

ALS Advocates are fully aware that the work we do may not directly help us each individually because of the average lifespan. However, we are forever hopeful that our efforts will pay off. The important thing is that we are committed and will continue to find ways to advocate every way we can. I pray for a cure for every day and that a day will come where I will never have to advocate for ALS again. Until then, though, I will do everything I can to help the fight.

Weather you’re an advocate for ALS or another cause, being passionate and continuing to fight, fight, fight is the most important thing you can do. Keep fighting and Go Cowboys!

Love and Blessings

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