Friday, July 14, 2017

"The Ask" for Parkinsons Advocates

Imagine my surprise when I opened an email from Caitlin Jurman of the Michael J Fox Foundation for Parkinson's Research!

She said the picture for their blog post is "seriously perfect" and "I will love it."

Hmmmm...wonder what it is?

"Advocate this August Using MJFF's New Resources" features our US Senator from West Virginia, Joe Manchin, with non other than this never-to-be-52-year-old-grey-haired-Hott-bloggin'-mama...me!  Check it out:

Senator Manchin receives my "ask" during the Parkinson's Policy Forum. (Picture from the Michael J. Fox Foundation.)
Holy cow! (He's tall!) Here's what happened: In February, Dan and I attended the Parkinson's Policy Forum on Capitol Hill with, you guessed it, Michael J Fox, and 200 other people with PD from across the country.  We spent a day in advocacy training before we ventured the Capitol halls with our new Parkinson's friends from West Virginia and our Fox Foundation escorts, Lydia and Jamie.  It's still hard for me to fathom lil' ole me from Hott Mountain hanging out with elected officials (and Michael J. Fox) in Washington, DC.  I had to wear my big girl clothes!

Prior to our arrival, we were asked to prepare an impact statement, for something they called the ask, for the Representatives, and encouraged to share our personal stories.  This was a question on which I thought long and hard.  Why is it important to fund brain research?  Why do people with Parkinson's Disease need their health benefits protected? Oh my goodness...where do I start!  Initially, I was a bit nervous to share my story.  These people are way too busy to listen to me!

But, I told our senators that it was important for them to fund brain research happening at the National Institute of Health and to protect health coverage for people with Parkinson's.  I asked for their support as I shared with them my "ask" in the form of a special picture.

See the special picture?  Senator Manchin is holding it in his hands posted on the Fox Foundation blog.

Special?  Oh it sure is!  Look....


This is our Hott family the day Dan walked Caity down the aisle to marry Brian on a sand dune in Duck, NC, June 8, 2014.

A walk. For most of us, walking is not such a big deal, right?  For most of us, we just walk from here to there...simple as that.

But, for people with Parkinson's Disease, just a walk requires all the elements to be exactly right.  Rest. Diet. Weather. Heat. Stress.  And, not to mention, the careful timing and combination of medications.

So, add in levodpoa to control muscle movement, and walking becomes natural!...  Sometimes.

As you can see, this day was a celebration.  Dan proudly walked Caity to their next "step" in her young life.

Notice others in the picture?...  Caity has a little sister.  With a lump in my throat, I asked our representatives to help people with Parkinson's Disease because before we know it, ....

Dan will be walking her down the aisle too.


 "For you have delivered me from death and my feet from stumbling, 
that I may walk before God in the light of life" (Psalm 56:13).  

"Ask, and it will be given to you; seek, and you will find; knock, 
and it will be opened to you."  (Matthew 7:7).





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