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ALS Research Review

7/18/2018

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As a person living with ALS I like to keep updated on the latest clinical trials and what is happening with research.  The ALS Therapy Development Institute is a US nonprofit biotech research organization.

On June 13, 2018, Dr. Steve Perrin of ALS TDI hosted a midyear ALS research review webinar. This session specifically outlined what people should be on the lookout for in 2018, including information on Masitinib, CopperATSM, NP001, NurOwn, AT-1501, and other potential treatments.  ALS TDI also updated us on certain clinical trials recently completed I have been following, that read out negative. Tirasemtiv was one, which I almost participated in but was unable due to travel constraints.

They also gave information on the recently passed United States Right to Try legislation.  It was informative to me as there are currently individuals trying to introduce "Right to Try" legislation in Canada.  Personally, I'm not a proponent of "Right to Try", I find too many snake-oil salesmen trying to take advantage of the vulnerable.  You wouldn't believe how many spam comments I get on this blog offering me a cure.  They are mostly "spells" from witch doctors offering a cure from my HIV and Herpes (Don would say "UH, HELLO, ALS BLOG?!?).  I do believe, however, in people having a choice in their treatment and would not oppose Canadian Right to Try legislation.

If you are interested in viewing the webinar, click on the image below.

I am participating in ALS TDI's study called the Precision Medicine Program (PMP).  If you are living with ALS and would like to contribute to much needed research, you can do so from the comfort of your own home!  It is easy to sign up, and fill out the questionnaires.  

Every month or so, I fill out an ALS Functional Review Scale and I receive an automated call to record my voice saying "I Owe You a Yo-Yo today" about 6 times, which is then analyzed by Google!  As I typically do not qualify for clinical trials (usually they call for people within their first two years of diagnosis) this is a method for me to feel useful and hopefully in some small way contribute to the eradication of ALS.  

The graph below is actual tracking of my personal ALS FRS results, and I'm happy to say it demonstrates slow progression (at least for now).  How cool is that?


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The ALS Therapy Development Institute is searching for more participants for their Precision Medicine Program.  If this might be right for you check out their website by clicking the button below.
ALS TDI
For information on Clinical Trials in Canada, click on the button below.
Clinical Trials in Canada
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Summertime

7/10/2018

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Who is the cheekiest?
Happy Canada Day!

I love summer.  We have been having a heatwave in Ottawa for quite some time now and it is perfect for me.  Not only because I miss the heat from when we were living in St. Maarten in the Caribbean, but with ALS the lack of circulation means that I am always cold.  In fact, I have to ask people if it is hot, I just don't feel it!  When I'm cold, my body cramps and freezes, when I'm warm I have much better movement.  Poor Travis, he is the opposite and is always hot, so it is a bit of a war back and forth with our air conditioning, though marriage is compromise and we are both pretty good at that.

It is also much easier for me to get out and about and I am trying to take advantage of that.  After the Walk for ALS Keith & I took a trip to Bowmanville and visited with family.  For one night only, we definitely made the best of it and had a great time with Wendy, Mike, Brad, Brooklyn, Erin, Sue & Wayne.  Love you all!

What better way to spend Canada Day than in Algonquin Park?  As we have in previous years, we stayed at Killarney Lodge, the only place I have found so far that has accessible cabins in the woods.  It is so perfect for us, we have our own cabin with a ramp, toilet seat raiser, shower chair and accessible dining room.  Travis can even wheel me down to the water.  I feel so grateful for this experience.  As we were driving into the park, we saw a moose.  Nothing I would rather be doing on Canada Day!  Travis took me canoeing, swimming in the lake and he tried paddle boarding for the first time while I hung on to the back and got a free ride in the water.  We spent most of our time feeding chipmunks, listening to the call of the loon, and of course I achieved global domination (Risk!).

Our balcony garden is thriving due to Travis's green thumb, put your requests in now for homemade hot sauce and homemade pesto!

I am also continuing my advocacy work for ALS by participating in focus groups and letter writing to ensure patients living with ALS have their voices heard on issues at a local, national and international level.

Check out our summer photos on the gallery page of this blog.



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    Author

    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com