Day 4 of challenge: Today I would like to talk about a rare, neurodegenerative disease called Ataxia Telangiectasia. This inherited disease affects parts of the brain causing problems with movement and coordination and weakens the immune system, leaving them open to infection. The current life expectancy for 50% of those affected is only 22 years old. It is a devastating disease not only for the child but the family as well. I was moved to tears watching different videos of the children affected. The National Ataxia Foundation is one of the leading organizations raising funds and awareness for the disease. I was impressed with all of the information made available on their website, including financial reports. With every organization conducting research, there is bound to be controversy over it. This is where my post from yesterday comes in. If you dont like something about how the research is conducted or maybe how the funds are used, can you find another organization to promote in its place. With rare diseases come few, if any, organizations that promote awareness over the matter. September 25 is International Ataxia Awareness Day. My challenge is for you to educate yourself on this rare disease. Find out what organizations are out there. Be the one to make a difference. Attached is the link to the website and a very touching video I found on YouTube. May you strive to be a person that makes a difference. https://youtube/watch?v=a_h8aOg0F5E ataxia.org/
Posted on: Fri, 29 Aug 2014 17:28:42 +0000