A Rare Lysosomal Storage Disease

Rare Disease Day 2012

Rare Disease Day 2012

February 29, 2012 is National Rare Disease Day. Even on leap year, we can make this day a special day! What isn't so RARE about rare disease is the fact that it affects all of us. Although that sounds like a vague statement, let's think about this a bit more.

Rare Disease Day 2012 HopeA rare disease affects less than 1 in 2,000 people. Chances are, you know someone right now and you might not see them. There are more than 6,000 rare diseases. These loved ones, neighbors, strangers, and people on the opposite side of the earth face a different problem because they have challenges unrelenting. Sadly, they face the same problems. In total, there are hundres of millions of people around the world that are affected by one of those 6,000 rare diseases.

No one wakes up in the morning and says, “I want to have a rare disease today” but rather gets thrown into the “club” that no one wanted to join. So many families face struggles and burdens that are overwhelming. They deal with issues of getting health insurance companies to approve medications and treatments. They struggle financially to pay for these medications/ treatments and even have to some times quit work just to take care of their loved one. Has this been you? Do you know someone that you've seen this struggle take place? Why not lend them a hand and give them confidence that you can help in some little way?

The Niemann-Pick Children's Fund was started because of one of those 6,000 rare diseases. It's name is Niemann-Pick Type C. Our world changed on August 8, 2008 while everyone else in the world was watching the opening ceremonies of the Beijing Summer Olympics. The doctor answered when we asked, “what can we do”? After her long pause after looking at the ground, “you take them home and love them the best you can”. No parent who receives news like this deserves to have that experience! Granted, there is no cure or effective treatment at this time but just knowing that they will have a shortened life and superdad or supermom can't fix it? blah.

Hug someone you love today. Hug someone who has a disability and look them in the eye and tell them that “they are loved”.

Check out this Facebook Page: Global Genes Project and Fund's

If you are running in the 2012 Hospital Hill Run presented by Price Chopper here in Kansas City, check out our Facebook Page for a discount!

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