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The week of the Trinity Health Seaway Run is here and the coverage has been a little more than we usually do.  The event itself is an amazing staple of summer and the impact it has locally is huge.  From the amount of visitors it brings in to the opportunity it gives those who want to test their ability to compete at any number of levels is amazing.  This year too, there's a special event happening within the race around Sue Buckley.  Sue began her running life after 50, and with a diagnosis of ALS in 2021, it could have easily stopped her from being a participant.  Sue also has an amazing group of friends and family that were not going to let her miss it, so...they figured out a way to make it happen and the ALS Association Michigan Chapter has taken notice. 

 

Meet Jena McEwen.  Jena is the Director of Development for the ALS Association Michigan Chapter and she's joining us today to help explain ALS (Lou Gehrig's Disease) in a little more detail and how this unstoppable, progressive disease. What is first noticed by those who have it, how the diagnosis process works and how the work of the ALS Association carries on to help find treatment options and one day, hopefully a cure for this dreadful fatal disease. Jena was contacted by Trinity Health Seaway Run Director Bryan Lambert who also has a very personal tie to ALS. 

From the ALS website - "Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. They govern voluntary movements and muscle control.  ALS causes these motor neurons to degenerate over time until they eventually die. When the motor neurons die, the brain can no longer initiate and control muscle movement. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move and breathe."  It's one of the diseases faced by so many that leaves a ripple effect through the friends and family because the journey is so long, and honestly...dramatic.  It's hard.  

It's not being ignored in any way.  With Sue and her team...it's awareness in plain sight.  You will see them, run with them, cheer them on and know that something remarkable is happening.  With Jena, she's coming on to talk about some of the details and some of the things you may not be aware of that you can do to help.  From our end....we're finding those who are the miracle and make the miracle a little bigger.  

If you'd like to know more about what Jena referred to in our conversation, here are the links.  If you'd like to participate in ALS GENETIC TESTING CLIICK HERE.  If you'd like to be a part of the WALK TO DEFEAT ALS IN GRAND RAPIDS CLICK HERE.  If you'd like to make a CONTRIBUTION TO THE ALS ASSOCIATION, CLICK HERE.

Our thanks to Jena for her help in talking a little more about ALS and Sue and her team for the inspiration.

als assoc

 

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