Rare disease day Feb 28, 2015!

As someone living with a rare disease I am writing today to bring awareness on behalf of all of us living with a rare disease as tomorrow is rare disease day.

If you are an individual who has a disease that affects fewer than 200,000 people in the US than this day is also for you!

Rare disease day 1st got started in 2008 in European countries but in 2009 became recognized by the US. It has since became a world phenomenon with 84 countries in 2014 recognizing this day!

Here is the official video For Rare Disease Day 2015:0 http://youtu.be/zQIeiQ7S6tQ

About my disability, I was diagnosed at 12 with a genetic, life shortening, nerve disorder called Friedreich’s Ataxia. Its basic causes are a loss of balance, coordination, and fine motor skills. There are lots of symptoms that come along with FA that are determined on the specific individual who has it. Some of my symptoms so far have included: scoliosis (curvature of spine), turning in of feet, heart issues, diabetes, some vision changes, and slight hearing loss. That is about it for now. Yay me! I walked (clumsily) until I was 18, drove a car for 7 years, and now I am doing good to drive my power wheelchair:)

If you would like to learn more about FA you can go to http://www.ataxia.org.

Together we can raise our hands to make everyone aware!

Rolling on, Stephanie

Did you say BBQ???

So we are back in the swing of things and getting ready for our 8th annual Amateur BBQ Cookoff that will be held June 12-13th, 2015 at the Toyota Stadium in Frisco Texas! It is being held at a new location this year with new exciting things in store! An event you do not want to miss!! If you have never been to one of our great BBQ’s before it is phenomenal! We are in need of corporate BBQ teams, vendors, and lots more. Just check us out online to see what all is available for you. Everything is so much appreciated! Below is the site map of just how things will look!

Don’t forget to go check us out at http://www.campcraigallen.org!!
Rolling on, Stephanie

A sweet weekend for some beautiful ladies!!

Each year Camp Craig Allen sponsors one deserving lady to attend the Ms. Wheelchair Texas Leadership Conference and Gala in Houston, TX. The Conference and Gala happened to fall on Valentines weekend this year, it was sweet!! In year’s past Camp Craig Allen has sponsored Ms. Wheelchair Texas 2011, Amanda Hall, and Ms. Wheelchair Texas 2014, Laura Halvorson. This year we sponsored Racquel Flores. Racquel and her family are near and dear to our hearts and she is a wonderful candidate for such a beautiful organization. Camp Craig Allen and United Access were honored and proud to support Racquel in her journey. She did an amazing job at Ms. Wheelchair Texas with her platform on the importance of assistive technology. Although she did not win the crown she is now a Ms. Wheelchair Texas Ambassador and will advocate and spread her platform in North Texas. I am very proud of her and honored to call her my friend! She has been a big inspiration to me with the things that she has accomplished these past couple of years.This year’s title holder is Shelly Gray a lawyer from Austin, TX. This year we also sponsored the Little Miss Tea Party for young girls in wheelchairs where they enjoyed special valentines day treats, an ice cream sundae station, and games. It was a great time by all who went, and I know that new friendships were formed throughout this weekend!

Ms. Wheelchair Texas Ambassador 2015, Racquel Flores!

Shelly Gray, Ms. Wheelchair Texas 2015 & Racquel Flores, Ms. Wheelchair Texas Ambassador 2015!

?

Congratulations to all the ladies who were candidates in this amazing and oh so sweet weekend! The state of Texas will be represented well!

Rolling on, Stephanie

Let’s go LEGENDS let’s go!!

Because of the awesome generosity of Camp Craig Allen’s sponsor Community Portable X-Ray I was able to spend last Fri. night with 2 of my favorite friends, and my parents at the Platinum Suite for the Texas Legends basketball game in Frisco Texas.

Charlie forgot her selfie stick! But this is still one of my favorites! On the left is Anneliese, and the right is Charlie!

So everyone said let’s take a silly picture together… My dad photo bombing the picture through the rest of them off I guess!!

The games are held at the Dr Pepper arena! Because of it being in a suite food and soft drinks are included! I was very happy to know that they had diet Dr Pepper (most places do not carry Dr Pepper products, at least that has been my observation.)! Dr Pepper is my guilty pleasure!

So I am busted with the chocolate on the corner of my mouth!! Those were good cookies! All of the food and drinks were yummy!!

The facility was very nice and everyone was very helpful. The suite was posh! It even had 2 recliners in there! The great thing was that it is wheelchair accessible so I had no worries about not being able to see! I love being amongst the excitement of the crowd! Gets me pumped!

Even though we did not win this game against the Oklahoma City Blue it was neck and neck almost the entire game!

I know that this will not be my last time to enjoy a game. There are only 8 more games to attend before the season is over 😦 Feb 28, March 11, March 12, March 14, March 21, Apr. 1, Apr. 3, & Apr. 4. So get your tickets now, you can check the event calendar on the website at www.campcraigallen.org for more details! If you are wanting to sign up so that you can get tickets are you have to do is directly email info@campcraigallen.org and let them know how many tickets you will need. The tickets are on a first-come first serve basis, so do not wait!

Thank you again Community Portable X-Ray I had a blast!

Rolling on, Stephanie