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Letters for April 30: For those living with ALS, there could still be a treatment option ‘around the corner’

Letter writers acknowledge the disappointment in the ALS community after a drug was pulled from the market, praise a Virginia International Tattoo performance, and suggest Norfolk get some influencers to help revive the city.

In this photo provided by I AM ALS, Dan Tate, right, delivers a printed petition from ALS patients and advocates to Dr. Peter Marks, left, director of the Food and Drug Administration's center for biologics at the FDA campus in Silver Spring, Maryland, on Dec. 14, 2022. As an ALS drug is taken off the market, letter writer Sidney Smith hopes another drug is around the corner. (Sonya Elling/I AM ALS via AP)
In this photo provided by I AM ALS, Dan Tate, right, delivers a printed petition from ALS patients and advocates to Dr. Peter Marks, left, director of the Food and Drug Administration’s center for biologics at the FDA campus in Silver Spring, Maryland, on Dec. 14, 2022. As an ALS drug is taken off the market, letter writer Sidney Smith hopes another drug is around the corner. (Sonya Elling/I AM ALS via AP)
Author

Lou Gehrig’s disease

Re “ALS drug will be pulled from US market after study showed patients didn’t benefit” (April 4): The ALS ice bucket challenge of 2014 brought national attention to the disease, with approximately 17 million people across the country and beyond taking part in the challenge. Prior to the ice bucket challenge, amyotrophic lateral sclerosis was largely unknown, likely due to the small amount of people affected, with only about 31,000 people in the U.S. having the condition.

Because ALS impacts fewer than 200,000 people in the U.S., the condition is often referred to as an orphan disease. Sometimes the development of treatments for orphan diseases is overlooked by pharmaceutical companies given the potential limited return on investment. This is one of the many reasons why the removal of Relyvrio from the market for treatment of ALS is devastating to the ALS community. Despite this disappointment for the ALS community, it seems as though the developer of Relyvrio, Amylyx, has not given up on finding a treatment for the condition.

During the March MDA Clinical & Scientific Conference, Amylyx announced the development of a new drug, AMX0114, aimed at treating ALS. The current research into the effectiveness of AMX0114 for treating ALS has so far been promising with phase one clinical trials expected to begin sometime this year. So, while the news about Relyvrio is very disappointing, there may be a new treatment option for those living with ALS just around the corner.

Sidney Smith, Norfolk

International Tattoo

I attended the Virginia International Tattoo on April 18 and was thoroughly impressed. All the performances were wonderful. I was most impressed by the performance of “The Star-Spangled Banner.” In my 79 years, I have never heard a more beautiful, amazing and inspiring rendition of our national anthem.

Frank Maule, Virginia Beach

Revive Norfolk

I’ve seen the cities in the Hampton Roads area fall into a decline over time, especially Norfolk. The city used to be a place you wanted to visit as a kid. Now it’s somewhere people will avoid unless there is nothing else to do.

But the city has the potential to bounce back and be better. Money is everything, which is a problem, but a solution to this problem could be one of many things: find an influencer who gets enough traction from either Instagram or TikTok and see if he or she is willing to promote a city cleaning event. We would ask anyone who can come to the city during a certain weekend to help clean up, and at the end of the weekend cleaning we could throw a huge potluck. The influencer would post this, getting it to people who can help. We would also find community leaders to tell residents about it.

Now to get people back into the city: Again, influencers could help. They would post to their social media, but instead of a cleaning event, they would promote the city itself. They would go around and show the new, improved city and all that it has to offer. In this generation, those with a following are some of the only ones who are able to bring in people from different places.

Lastly, getting people to stay. With the new apartments and condos being built in the city, if we are able to promote it beyond Hampton Roads, we could convince people to come to Norfolk and live here. This will boost profits, which can go toward the city’s revival.

Sahar Naik, Maury High student, Norfolk

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