May 27th 2018

Why have I ended up creating a blog? It all started with my searching familysearch.org and I ended up on wordpress.com

So here I am, not really sure what I’m doing but going to have a crack at it!

My prime aim is to record my progression of ALS (amyotrophic lateral sclerosis) over time. Having been diagnosed on June 21st 2017, I’m coming up to my one year anniversary of the disease. Normally anniversaries are for celebrating. Well, I guess I am celebrating in a way as I continue with reasonably good health compared with many others suffering from this incurable disease. It gets us all in the end – some quicker than others.

We hope to change the status quo as we strive for further research in finding a cure. I attended the ALS Association Advocacy Conference in Washington DC on May 13th to familiarize myself with the organization. A concerted effort is being made to gain more recognition from those on Capitol Hill. Continued and even greater funding is essential to accelerate ALS research.

 

ALS Advocacy Conference 2018 Collage

 

 

 

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