Where Are Our Celebrity Advocates?

I love Michael J. Fox and wish that those of us in the Alpha-1 and COPD world had "our own" Michael J. Fox.

I have been the biggest fan of his for years, but I love him even more for everything he has done for himself and the Parkinson's community. I just finished watching Still, one of his movies, and I really liked it.

So many things about him motivate me. He inspires me to be a more passionate advocate, attentive mother, and selfless wife.

However, I've been curious. Where is the celebrity advocate for COPD?

The need for Alpha-1 and COPD advocacy

Since I was diagnosed with Alpha-1 13 years ago, I've thought many times that I should write a book about my family, including my parents and brothers, as well as about life with Alpha-1. I had a great childhood and would love to tell others about it.

Of course, not everyone may not be interested, but I would sure love to share my story, and Micheal J. Fox gives me inspiration for that.

The way Michael handles everything is impressive. He has raised so much awareness and money for Parkinson's and the Michael J. Fox Foundation. His foundation has had over 1 billion funded in research programs. The Alpha-1 Foundation and The COPD Foundation have also done a lot, but it would be nice if they had someone of celebrity status, like Michael, to help us.

Not that I’m wishing this on anyone, but I know they are out there; they just haven’t stepped up. The COPD community has had a few well-known people advocate over the years and brought some awareness and fundraising, but we need more.

Contributions to raising awareness in the past and present

Danica Patrick has helped us out some. Her grandmother passed away from COPD in 2001 at the age of 65. She did bring a lot of awareness with the help of the racing community.

Leonard Nimoy and his family have done a lot to raise awareness about COPD. In the same way, Danika has also been very important in this fight. But it's important for us to find someone who is fighting right now and can help us.

The Alpha-1 community has had a few celebrities, but the few that we know of have passed or haven't joined the Alpha-1 community.

According to biographer Sally Hoedel, Elvis Presley had Alpha-1, and with the recent death of his daughter, I can’t help but wonder if she had it as well. There were rumors that Michael Jackson had Alpha-1, but I think that was never proven.¹

Brooke McCarter, one of the stars of the movie Lost Boys, died at 52 from the complications of Alpha-1. One celebrity still alive with Alpha-1 is one of the stars from the first Top Gun movie, Kelly McGillis. I really don’t blame her, but wish she would support other Alphas to spread awareness to help raise funds for research.

Seeking celebrity advocates

There must be more stars out there with or without a confirmed Alpha-1 diagnosis. According to the Alpha-1 Foundation, current evidence suggests that there are at least 100,00 people with Alpha-1 in the United States, which means there are many more carriers out there as well. According to the American Lung Association, in 2021, an estimated 16 million Americans lived with COPD, although many more are misdiagnosed.^2-3

Where are the Michael J. Foxes of COPD who will stand up for those who have this disease and fight for them? What are your thoughts on this?

Do you know any other celebrities with COPD or Alpha-1? Please share with us in the comments below.