Sending out an SOS for ALS advocacy and support

It's past time for greater awareness about ALS patients, caregivers, and research

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by James Clingman |

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When baseball legend Lou Gehrig was diagnosed with ALS in 1939, unfortunately, not much about the disease was being discussed at the time. Instead, Gehrig’s career and baseball prowess dominated the news and public discourse.

His larger-than-life persona was well deserved, but his illness was also larger than life and should have been highlighted more than it was. America’s hero lived only two more years after his diagnosis, succumbing to ALS at the young age of 37. While the legend of Lou Gehrig lives on today, the cause of his demise is still lurking in the shadows of society.

What will it take?

Information is power only if we use it. Shortly after Gehrig’s famous speech to friends and fans on July 4, 1939 would have been the ideal time to raise awareness about ALS and funding to find a cause and a cure. Look at what took place after NBA star Magic Johnson’s disclosure in 1991 that he had been infected with HIV, or the late basketball player, coach, and sports announcer Jim Valvano’s speech in 1993 about his terminal cancer diagnosis. Hundreds of millions of dollars were raised, and continue to be raised, to fight these two maladies.

What is it going to take for us, in this 21st century, to put ALS and other rare diseases on the public radar? This probably speaks to a political dilemma vis-a-vis universal healthcare debates, but aside from that, does the solution reside among celebrities? I think not. If we are truly a nation that cares for all of its citizens, all sectors — public and private — should participate in problem-solving.

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The above-mentioned individuals used their particular platforms to bring attention to the public regarding their conditions. Collective sustainability worked with HIV and cancer, but that has not been the case with ALS. Why?

“But what about the Ice Bucket Challenge?” I’m glad you asked. When the challenge was started in 2014, it was a great way to heighten our knowledge about ALS and generate donations for research and other necessities to fight the disease. Unfortunately, the challenge itself became the focal point of the social media phenomenon instead of the disease, which has since been relegated to the end of the bench just a few years later. Over $100 million was raised during the challenge, but a much smaller amount actually went to the patients who need help to pay the tremendous expenses that come with caring for a patient.

I am blessed to have served in the military and to have much of the help I need, from medicine to supplies to equipment and more. Yet I still need supplemental financial help to spend my last days at home instead of a nursing home. Imagine what it’s like for someone who has less than I do. They need money, to be blunt. And I hope we will respond to that need as we initiate and sustain greater efforts to use searchlights to find the cause and cure, and spotlights to inform the public about ALS.

One of the most pressing issues we face is access to clinical trials and new drugs. I don’t think people who are deemed terminally ill should be denied experimental drugs or supplements. What’s the worst that can happen?

So, this SOS goes out on behalf of all advocates, researchers, medical professionals, caregivers, and patients: HELP!


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Bonnie J Dannels avatar

Bonnie J Dannels

Bringing awareness to ALS and being a community to support those traveling this journey is the vision of the nonprofit that our Family started after the passing of my husband in 2020. We live in a small community in Colorado and we host an annual walk, award scholarships to young adults who have been effected by ALS and be a support system in our local community. Our nonprofit is:
Paul's Mystery Ship To End ALS and our website is: www.paulsmysteryship.com

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