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Should we expect advocacy from famous people who have ALS?
Recently, several TV actors have announced their diagnosis of ALS. Some, like the late Eric Dane, have helped with advocacy and ALS awareness. Others, such as Russell Andrews, Roberta Flack, and Jenny Slatten, have not yet stepped forward.
Do you think famous people who have ALS should be expected to use their notoriety for ALS advocacy? Or should they be allowed to remain in private?
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6 Replies
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I am 50/50 about this. Part of me feels that famous people who are diagnosed with ALS should be left alone — to process the situation, draw family & friends close, begin treatment, and live each day fully. But, another part of me feels that since they already use their noterity for self-promotion and furthering their chosen career — they are obligated to continue to remain in the public eye — to support awareness events and be a role model for other pALS.
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I don’t believe we should ever EXPECT anyone living with ALS, famous or not, to donate some of their valuable time and energy for ALS advocacy. As I discussed in my earlier reply to this topic, I applaud and am deeply appreciative of every single person living with ALS (whether famous or not) who chooses to use their precious time and energy to help with advocacy and ALS awareness. This includes Dagmar. It includes my husband Hal, who in the early stages of his ALS was empowered by his efforts to raise awareness and advocate for research. And it includes the many others, famous and not famous, who contribute is so many ways.
Although the impact of advocacy from a well-know individual can be huge, the added stress is costly, robs them of time and energy, and likely also impacts their life expectancy.
We should just be very grateful for those who do choose to advocate.
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I completely agree with all of you. I appreciate those that use the spotlight to enhance awareness and I respect those who wish to remain in the shadows to work through this disease. It comes down to a personal decision for every individual. Unfortunately, it is typically after a person is diagnosed or has someone close to them being diagnosed before they will step into the light to highlight ALS. Myself included. I heard about Lou Gehrig’s Disease growing up but never drew the line to ALS until I was diagnosed. Same with the Ice Bucket Challenge. My kids were telling me about it when they’d come home from school. Still didn’t know anything about ALS. Then one day a little more than six years ago…I experienced foot drop and before I knew it my life was turned upside down. Now I am hyper-focused. Since I was diagnosed I have been talking to people to better educate them on what ALS is and is not. I was asked to attend the NEALS conference a couple years ago but a Hurricane canceled the event. Hope to get a chance to go and become an pALS ambassador next year. I coach high school soccer and we used that as a platform to raise awareness last year but I have to say I was uncomfortable about it. I am more of an introvert than an extrovert. My father would say “word of mouth” was the best way to advertise; “tell one person and they will tell ten others”. I don’t do a lot of outreach advocacy but I also don’t shy away if asked to discuss the matter of ALS. So, as I said, it is a personal decision for all of us in how we decide to either be vocal about ALS or not. My regret was my ignorance before ever being diagnosed. Would I have used my local platform to have raised awareness for all those with ALS had I been better educated on the disease? I don’t know…
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jhogan, I commend and thank you for what you do (and have done) to help raise awareness of ALS. We don’t have to do big things… like you said, word of mouth is one of the best ways.
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I do not think we should not expect anyone to come forward with their ALS. Leave people alone.
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This is a tough, but important question. Advocacy from celebrities can move the needle forward on awareness, research and funding, in particular from government entities e.g. Eric Dane’s meeting with Congressional representatives. However, I wouldn’t expect that from anyone who is simultaneously living with ALS. During my husband’s journey we did carve out time to take on small advocacy missions like letter writing and phone calls to persons in positions of impact–and that included participation in clinical trials. Part of that awareness hurdle included raising awareness among our family, friends, neighbors, colleagues and others with which we had contact. While Jay was still able to walk we took a trip to Hawaii and one bold (ok, obnoxious) tourist asked him why he was using a scooter en route to the restaurant when said tourist had seen him walking around the pool and beach earlier in the day. Jay gently launched his 90 second elevator speech about his needs and very specific detail about ALS. Tourist went pale. Most people aren’t like that and don’t question, and in some ways we wished they did–not to be pitied, but rather to raise awareness. More often than not the folks we encountered in social circles knew someone with ALS. It’s kinda wild–mention ALS and either they know someone (or don’t) or are aware of celebrities if they’ve paid attention at all–Dwight Clark (49ers), Roberta Flack, Steve Gleason (N.O. Saints), Eric Dane, John Driscoll Hopkins (Zac Brown Band), Stephen Hawking, and of course Lou Gehrig, and the list goes on. That said, once a celebrity reveals diagnosis that alone can bring on uninvited attention and eager paparazzi, so I completely understand the need not to reveal and the need for privacy. My husband was not famous, but well connected in legal circles, and chose unique ways to raise awareness in those circles through writing and local advocacy until his death in 2024. I continue that legacy to this day as does our daughter who is now a nurse. Wishing you the best Dagmar–you are an inspiration as are outspoken others living with ALS (Amanda Sifford, Brian Wallach, and Brian Jeansonne and their families come to mind).
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