The American Syringomyelia & Chiari Alliance Project is a National organization that works very hard spreading awareness, around the globe, on chiari and syringomyelia.  These are 2 conditions that my daughter and I have.  ASAP board members consists of people that are patients, as well as, treating physicians.  

I became familiar with ASAP in 2017 when I discovered the chiari conference they hold annually.  I attended it and was moved to tears with the dedication each and every person there had towards finding treatment...and ultimately a cure...for those with chiari and syringomyelia.  I knew I needed to be a part of this organization.  That's just what I did.

To help prepare for the 30th Annual ASAP Conference, in Orlando, back in July...I pushed outside of my comfort zone and reached out to businesses around the United States for donations.  I wanted donations for the raffles, for the silent auction and for gift bags.  To my surprise, many accepted my invitation to donate.

As a result of my hard work and dedication, ASAP awarded me the Shining Star Volunteer award.  I wasn't able to be there to accept it and I'm truly honored.

The title 'Shining Star' isn't something I, personally, think I'm worthy of.  I feel like I only did what anybody else in my shoes would do.  When you are diagnosed with a condition that holds no cure...only painful treatments that get you from one day to the next...you feel helpless.  But, I could only allow the helpless feelings to sit with me for so long.  I knew I needed to join the rest like me and fight for a cure.  Searching for all of those donations was simply my way to help fund research...research that ultimately will lead to a cure...or at least more treatments to keep us going.  Searching for all of those donations would also fund education and awareness to other neurologists and neurosurgeons around our country...in hopes one day patients in Maine won't have to travel long distances for treatment.

Thank you ASAP for thinking of me.  You can expect the same dedication...if not more...from me next year.

In the meantime, consider joining an ASAP fundraiser that I'm currently organizing in Augusta...with the help of B98.5, The Red Barn & Sharon Hood Dixon Road.  Click here to support ASAP Cruisin' For Chiari