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Opinion: Why more royals should get involved with the fight against ALS

Photo by Brittani Barger

Our Deputy Editor, Brittani Barger, an ALS Advocate, writes her opinion on why she thinks more royals (and people as a whole) should take up the cause of the fight against ALS.

Today marks 4 years since I lost my mother to ALS (MND in the UK). Since then, I’ve become an ALS advocate, and I decided to write this opinion piece on why I think more royals should take up the cause for ALS. It is a cause especially close to my heart, and if anything, I hope this article helps bring a bit more awareness of the disease.

What is ALS? Amyotrophic lateral sclerosis (also called Lou Gehrig’s disease) “is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control,” according to the Mayo Clinic. Symptoms of the disease include difficulty walking, speaking, chewing, and swallowing. A person can have uncontrolled fits of laughter or tears and have cognitive and behavioural changes. Some can eventually also be diagnosed with frontotemporal dementia as some patients can have memory issues with ALS. Most of the time the disease begins in the limbs, but it can begin in the latter stages – in the mouth, throat and lungs, which is the most progressive form of the disease.

A little over 5,000 people in the United States are diagnosed with ALS per year. “Every 90 minutes someone is diagnosed with the disease and someone passes away from it,” according to the ALS Association. Most of those with ALS are between the ages of 40 and 70.

You can learn more about the disease here.

ALS is fatal. There is no cure.

My mother, Joyce, in 2014.

Allow me to share a little information about my mother’s battle with ALS. She was diagnosed with one of the most progressive forms of the disease (bulbar ALS) at the Mayo Clinic in late May 2015. The disease was quick-moving, and I saw my strong mother begin to lose her voice, choke on food and liquids, and become less stable on her feet to where she needed a wheelchair. By mid-December, she chose to have a feeding tube because she could no longer chew and swallow her food without getting choked. Afterwards, she was in insurmountable pain, and no one could even hold her hand without her crying. She couldn’t speak by this point, and she couldn’t hold a pencil to write. Her memory began to fade, and she no longer recognised me as her daughter. We were advised by her doctor to put her on hospice care right after Christmas to make her comfortable in her final days so she was no longer suffering. She died on 9 January 2016, not even a year after her diagnosis. She was just 67.

The more awareness there is for this disease, the better. It allows for better fundraising to help with research so that one day there is a cure and no other person has to suffer. A famous face getting behind a cause like this does wonders with getting the word out and raising money. MND Scotland spoke to me last year about the help the Princess Royal has been by giving her patronage to them.

Of course, royals like Princess Anne have been involved over the years. Prince Albert of Monaco took part in the Ice Bucket Challenge that swept the web and Queen (then Princess) Máxima of the Netherlands swam the two-kilometre Amsterdam City Swim in 2012 for ALS. It would be wonderful to see more royals step up to take part in events like these or ALS/MND walks in their countries.

I know royals have many organisations wanting their attention and charities that are close to their hearts. If anything with this article, I hope more people, including royals, take time to learn more about ALS and consider donating some time to the fight against the disease, whether that be publicly or privately.

About author

Brittani is from Tennessee, USA. She is a political scientist and historian after graduating with a degree in the topics from the University of Tennessee, Knoxville, in December 2014. She also holds a master's degree from Northeastern University. She enjoys reading and researching all things regarding the royals of the world. Her love of royals began in middle school, and she's been researching, reading, and writing on royalty for over a decade. She became Europe Editor in October 2016, and then Deputy Editor in January 2019, and has been featured on several podcasts, radio shows, news broadcasts and websites.