Are you gearing up for ALS awareness month?

[Richard]

I get lots of emails from various ALS organizations about May being ALS awareness month.

 

However, in the past, CNN and Fox news carry no stories about May being ALS awareness month.

 

A greater effort needs to reach the non-ALS community about May being ALS awareness month.  How about these various ALS organizations putting together a prepared write-up about ALS and distribute it to local and national news organizations.

 

Thanks, Rich

 

 

TA

[Amanda]

Hello Rich,

I see more and more stories  in national and local news on ALS/MND and other neuromuscular diseases; especially when there is an advancement like Tofersen. Also, each time a celebrity or relative of a celebrity is diagnosed it also draws national attention.  However, the stories are not only when there is a research break through or a celebrity diagnosis; it is also when one of us reach out to the news stations or network with a tip or story idea.  We are the ALS community and together we have influence and power. We need to draw attention to our needs! Below are a few stories that aired on national news on several different networks. Many times the news picks up a story because someone in the community reached out to them! So reach out!!

https://www.foxnews.com/entertainment/john-driskell-hopkins-als-finding-solutions-disease-nonprofit

https://www.cnn.com/2022/09/29/health/als-drug-relyvrio/index.html

https://www.foxnews.com/health/11-children-diagnosed-new-form-als

https://www.cnn.com/2022/11/14/entertainment/roberta-flack-als-diagnosis/index.html

https://abcnews.go.com/Health/fda-approves-new-drug-rare-form-als/story?id=98836747

https://abcnews.go.com/Health/Healthday/story?id=4506244&page=1

https://www.cbsnews.com/video/race-to-a-cure-for-als/

https://www.cbsnews.com/video/zac-brown-band-guitarist-john-driskell-hopkins-discusses-als-diagnosis/

The local news station in Fort Myers, WINK News, is doing a story next week on ALS. I’ll be interviewed along with a doctor from the ALS Clinic here. They may even report on my first dosing of Tofersen.  The story is still in the planning stage so I’ll learn more as we go.

I encourage anyone, each of us who are comfortable, to email your local news station and share your story about ALS and ask if they are going to be doing a story in May for ALS Awareness month. WE CAN make a difference.

One for All, and All for one!! Cheers Richard!

Amanda