rare-disease-day-2017This coming Tue, Feb 28 is Rare Disease Awareness Day. A disease is considered rare when it effects fewer than 200,000 people in the USA. That is not many people at all when you consider the massive amount of people living here.To check out much more that is happening for this very special day you can go to: http://www.rarediseaseday.org/

I just happen to be one of those individuals with a rare disease. It is called Friedreich’s. Ataxia. Approximately 1 in 50,000 people in the US get this rare disease, yay me! A genetic progressive neurological disorder that affects balance, coordination, and fine motor skills. I will not give you all the details just go to http://www.curefa.org. To be completely honest not a huge fan of the word  disease, but this day started in 2008 in  England.  I do not have any say so in changing the name, so I will roll with it! This day has brought awareness for us and for that I am okay with the name.

If you or someone you know has a physical disability that is rare they are not alone, and have an immediate family in Camp Craig Allen! We have an online support group on Facebook called “Camp Craig Allen’s Corral! It is a closed group, and there is no topic is off-limits! So if you have something regarding a physical disability they you would like to share, comment, or post we would love to hear it! I am one of the moderators on the group and I would love to hear from you. Check out the group by clicking here: https://www.facebook.com/groups/cca.corral/

PS – don’t forget that this Tue is also the radio show on KVGI, “Frisco HOPE!” They will be having a special guest live from 12-1 PM! You will not want to miss it. You can download the app from the website or check it out on the faceinadio through Dawn Cruzan’s page on Facebook. Even if you are not able to make it the whole time or not until later please do so, it is worth it!

Rolling on, Stephanie

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