A Rare Lysosomal Storage Disease

We’re Famous, Almost | Palm Connections and Mashable

We’re Famous, Almost | Palm Connections and Mashable

Niemann-Pick Children's Fund was featured on through Palm Connections. This is huge because literally thousands upon thousands aggregate news and read these publications. A few months back I ran across an opportunity on Facebook to submit an application to be apart of Palm Connections. They wanted to utilize technology and good causes in conjunction with one another to share with the world. I thought as I filled out that application there is no way out of thousands of applications we would be selected.

NPCF facebook page

On July 30th I received an email back:

“Your story would be great for this. It's unfortunate, and I'd hope that in telling the story there'd be some uplifting successes along the way, but it would certainly be a good cause for raising awareness. Basically this program is all about showing people doing good things, inspiring things, ambitious things…and how Palm can help do more by being better connected.”

We were elated that we had this opportunity! In conjunction we started our Facebook Page for the NPCF. We already had a “Cause” page but Palm wanted us to have more of a hub for information and sharing. You can visit our Facebook Page here and Like it :): Niemann-Pick Children's Fund.

Palm Connections & Niemann-Pick Childrens' Fund | Facebook

Niemann-Pick Type C Disease is a rare neurological disease that affects very few. Maybe 75 in the United States currently. To put  into perspective there are well over 300 million people here in the United States. To say this disease is “rare” is an under statment.

With no cure or effective treatment as of today, this disease will claim the lives of mainly children and a handful of young adults. NPC stems from chromosome 18 where each patient has two mutated genes. One inherited from each parent. Those chances are one out of four with each pregnancy. Most carries of this gene are unaware and most medical professionals are equally unaware because of the “rareness” of NPC.

The core issue is the cells inability to metabolize cholesterol. To put it simply, something in the “recycling factory” of the cell malfunctions.  This is the good cholesterol your body needs to live. It is essential to everyone reading this post. You and I have the same gene (maybe not mutated).

Through this experience we will be sharing photos, videos, links, and posts with our Palm Phones. Our overall goal is to raise awareness. October is Niemann-Pick Disease Awareness month.

Read the full article here:  Palm Gives 500 Pre Plus Phones to Good Causes

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