What People With ALS Want You to Know About ALS

Challenge Me to Educate the World About ALS

We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.

“Challenge Me” is a concept well known to people living with ALS who face an insidious foe every single day. Pat Quinn, who co-founded the ALS Ice Bucket Challenge with Pete Frates in 2014, talks about affirming his readiness to take on whatever ALS may throw at him that day. He says “Challenge Me” captures the spirit and determination of people with ALS.

We asked some other folks in the ALS community what they want you to know about ALS. Here is what they said.

Patricia H., Texas – “ALS is one of the most devastating diseases in the world. It wreaks havoc by paralyzing the body but leaving the mind intact to suffer emotional instability. And ALS-related expenses can lead to family bankruptcy.”

Patricia Hamilton-edited

Scott V., Illinois – “Yes, it sucks, but you have two choices – run from it or embrace it. I choose the latter because it helps me keep perspective as there’s always somebody worse off. We have to break ALS down into the three simple letters: A=Arms, L=Legs, and S=Speech. These are what ALS takes from me, but it’ll never make me stop moving forward to help those worse off.”

Scott Van Velsor2

Gwen P., California – “ALS is impartial. It knows no bounds. This is anyone’s disease. Participation in research is critical if we want to end ALS. Organizations can set up all the best studies in the world, but without participation, how can we move the needle toward finding a cure?”

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Tony S., Pennsylvania – “ALS is not incurable. It is just underfunded and misunderstood. Many people are amazed when they find out that there is no effective treatment.”

Tony Sipling-cropped

Sunny E., Texas – “Three things I want you to know about ALS? One – It can affect anyone at any time. Two – It’s ruthless and unforgiving in every way imaginable. And three – The families living with this disease need all of the love, prayers, and support available. My personal mantra is ‘no apologies, no excuses, no regrets.’”

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Bill S., Missouri – “ALS takes everything from you – your strength, your movement, your voice. [These are] senses most people take for granted. But you can’t give [ALS] anything. And I will fight for as long as I can.”

bill shields1

Rich P., Florida – “I want people to know I believe we’ll find a cure for this disease – maybe not in my lifetime, but within my daughters’ lifetimes. [….] As long as I have breath in my lungs, I’ll bring as much awareness to ALS as I can. I participate in [research] studies… and am a staunch advocate for the AL S community. I know my efforts may have no direct impact on me, but [if they] make it a little bit easier for even one person battling this disease, everything has been worth it.”

Rich Pollock3

ALS heroes wake up to bravely fight ALS every day. They don’t know what the disease will take away from them next, yet they are taking every opportunity to love, create new memories, and soak in the moment, all the while advocating for the ALS community and raising awareness about the relentless disease.

The Challenge Me campaign celebrates the will within all people living with ALS – and all of US – to find a cure for ALS, to find better ways to care for those living with ALS today, to influence policy that empowers people with ALS, and to continue to raise ALS awareness in our communities.

  1. Challenge Me to participate in the Walk to Defeat ALS
  2. Challenge Me to volunteer with the nearest chapter of The ALS Association.
  3. Challenge Me to increase my donation to The ALS Association through the end of the year.
  4. Challenge Me to run 250 miles in two months and ask my community to donate for each mile I run.
  5. Challenge Me to lobby my state representatives for support of ALS-related legislation.
  6. Challenge Me to join in the ALS Youth Challenge.
  7. Challenge Me to ask my company to support the fight against ALS.
  8. Challenge Me to love harder and live in the moment.
  9. Challenge Me to catch more fish than I’ve ever caught this summer and ask my social media network to pledge a donation to The ALS Association for every fish caught.
  10. Challenge me to tell my ALS story to five new people.

Whatever you have within you to advance our fight against ALS, adopt it as your own Challenge Me call to action.

Let’s get going! Click here.

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