September is over and so ends the 2013 Crush Chiari campaign
for Chiari and Syringomyelia awareness sponsored by the Chiari and
Syringomyelia Foundation (CSF). This year was my first to participate as a
fundraiser and although I know I drove most of you crazy with my incessant
posting, I wanted to share my gratitude with you all for your support. The
funds donated through the jars have been tallied and donated to the fundraising
site. Those of you who supported me in the Crush Chiari campaign raised $700
to go for a cure! You helped me exceed my goal by $200 and have allowed me the
opportunity to be one of the top fundraisers for the cause!
The overall Crush Chiari goal was $15,000 and, although we
did not reach that goal, you all helped us raise a lot of money for a good
cause. As of this evening CSF has raised $1,665 (11.1% of their goal). Please
know that YOUR support helped the foundation raise over 42% of that money
by supporting me through my fundraising page.
I want to especially thank the locations who allowed me to
place my donation jars at their locations, those of you who donated directly on
the #CrushChiari website, those who gave through the donation jars and, most
especially, those of you who spread the word by teaching others about these
conditions. The support I was given last Wednesday for the wear purple for a
cure day was so humbling for me! Those of you who wore purple showed how much
you truly cared about me and my desire to find a cure for those of us with this
condition. The flood of purple did the trick because every time someone would
see those of us matching in our purple attire we could explain how we matched
due to the Chiari Awareness Month and we could tell them about Chiari. That was
what the whole campaign was about. Thank you for helping me realize my vision!!
I’d like to take this time to thank my family for their
dedication to helping me raise money for this campaign despite all of the
setbacks we encountered this month. Justin Hair, Ginger & Jim Powell, Amber
Love, and Stephanie & Aaron Powell have been the epitome of family
during this time. They helped me drop off jars, pick them up, pester you all
with posts about awareness and donated not only funds, but their time to
support me in this cause. They did this even as I underwent my open-heart
surgery last week because they knew how much this campaign truly meant to me. Their
support should most definitely be recognized!
The following businesses allowed me to place jars at their
locations raising $151.80 collectively
for a cure:
Cowboy's General Store
Dismuke’s Pharmacy
Luling Tire & Automotive
NAPA Auto Parts - Salt Flat Feed & Mercantile
Stanley Theater Collectibles
Taqueria Durango
Texas Lutheran University Bookstore
The Watermelon Shop
Plans for Future
Fundraising and Awareness for Chiari and Syringomyelia:
Unite@Night, June 2014:
I will be participating in the Unite@Night Walk with the CSF
Foundation in June of 2014. I have not selected a date for this walk, yet;
however, I would LOVE for you to all participate with me. Here is information
from their website about the walk:
“The Chiari & Syringomyelia
Foundation’s (CSF) unite@night is a one-mile casual evening walk in various
locations around the country and in Canada during the month of June. This walk
will bring together people who are suffering with devastating effects of Chiari
malformation, syringomyelia, and related disorders such as, but not limited to:
Ehlers-Danlos Syndrome, hydrocephalus, intracranial hypertension, dysautonomia,
and more.”
You can find more information on their website here: http://www.csfinfo.org/walk-information1/.
Crush Chiari,
September 2014:
If you would like to participate in next year’s #CrushChiari
campaign by allowing me to place a jar at your business, please send me a message. You
can place a jar at your business for any length of time you wish. If you would
like to participate only in September, that is fine; however, some have asked
to allow the to keep one of my jars at their location year round to raise as
much money as possible. I would be happy to make a jar for your location. It
won’t cost you anything except counter space and the funds go directly to a
great cause!
Conquer Chiari Walk
Across America, September 20, 2014:
I plan to do a national walk in September next year to
spread awareness about Chiari and Syringomyelia. I will be attempting to set up
a walk in the Austin Area. Anyone who wants to help is welcome to contact me.
We will begin the process of finding locations in Austin in January. Here is
more information:
“The Conquer Chiari Walk Across America is an annual
fundraising and awareness event comprised of a series of local walks held on
the same day.”
To find out more information about this please visit the
website: http://www.conquerchiari.org/ccwaa/ccwaa-main.html.
I don’t plan to give up fighting for a cure for any of these
conditions. Chiari and Syringomyelia are a part of my life, despite my utter
distain for them, and I want to help others who also have to deal with these
situations to have a running start. Raising awareness and funding research is
the best way I know to do this at this time. I will continue to fight until a
cure is found…and maybe then, I’ll fight to ensure everyone can get the cure no
matter his or her financial background. I’ve got a lot of work ahead of me…care
to join?
Thanks again for your support!
