Why I’m fully committed to promoting ALS awareness

As I’ve pointed out several times in this column, public awareness of ALS is vital to obtaining and sustaining progress in finding solutions to the myriad issues associated with the disease.

Have you ever heard of NurOwn? It’s a stem cell therapy that is being considered for approval for ALS patients by the U.S. Food and Drug Administration. Public comments are being solicited prior to Sept. 20 from victims and others regarding our experiences with ALS.

I’m sure most patients and their families know about stem cell therapy and the hope it brings. But there are many in the general public who do not. It is critical that as many people as possible have all the information available, because anyone at anytime can contract ALS. With that stark reality in mind, I encourage everyone to send in comments on this important next step.

Recommended Reading

August 7, 2023 News by Steve Bryson, PhD

Neurologists frustrated with ALS treatments now on market: Study

Calling in the cavalry

Speaking of comments, because of this column and its publisher, Bionews, I was invited to participate as a panelist in an ALS Zoom workshop about ways to live well with ALS. It was a three-hour session sponsored by the National Academies of Sciences, Engineering, and Medicine via its ad hoc committee on ALS, called Accelerating Treatments and Improving Quality of Life.

My fellow columnists and I never know exactly who reads what we write, but we are grateful to have the opportunity to share information through Bionews and ALS News Today. Ideally, this offers us a chance to be involved in solution-based initiatives.

In the workshop, my wife and I spoke about “Understanding Living with ALS,” along with three other patients. It was both inspiring and informative for us and my daughter, who watched the discussion. The main topics of our session were accessibility to services, clinical trials, caregiving, and maximizing patients’ capabilities prior to and during the latter stage of ALS.

My panel included two women in their 20s and 30s and one other man in his early 60s. Of course, we had different issues, which helped us look at ALS from different angles. Especially refreshing for me was hearing the young ladies speak about their positive outlook on life. Extensive traveling by one and caring for a baby by the other were awe-inspiring.

On the other hand, I was saddened by the situation voiced by the male patient. He is facing the possibility of his children getting ALS because he has the familial type. Knowing that ALS has a 100% fatality rate is one thing for us to endure as patients, but passing it on to our children is a heavy burden to bear.

On a positive note, while there is much room for encouragement among those affected by the ravages of ALS, the public at large can be hopeful and helpful in this fight for victory. Help is surely on the way, and I look forward to the day when we can say, “The cavalry has arrived.”

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.