rare disease
UnconVENTional Aid: Helping Nick Dupree, Social Networking Style

UnconVENTional Aid: Helping Nick Dupree, Social Networking Style

As you all know, being the creative type that I am, I love do it yourself projects… however, I found myself in the middle of a rather unusual project, which involved a lot of creative “thinking outside of the box” and it was more then just a do-it-yourself. It was more of a “do it...
Products to Benefit Mootha Lab for Mitochondrial Research + GIVEAWAY and Awareness Freebies!

Products to Benefit Mootha Lab for Mitochondrial Research + GIVEAWAY and Awareness Freebies!

It’s that time of year again! Mitochondrial Disease Awareness Week¬† starts tomorrow! I’ve been busy re-stocking my etsy shop with awareness products! I’ve often been asked, Which Mitochondrial Disease organization do you support?” as though I have to “choose one.” There are multiple non-profit organizations out there which help mito patients such as MitoAction, UMDF,...
1000 Paper Cranes for Leslie's Wish

1000 Paper Cranes for Leslie’s Wish

Since a lot of you LOVE D.I.Y projects, I thought I’d involve my readers in a DIY project to help someone else’s wish come true: Leslie (Whitt) Williams is a 24 year old from Ohio who is quickly losing her battle with mitochondrial disease. I asked her older sister, Megan, to tell us a bit...
DIY  medical supply roll

DIY medical supply roll

In honor of Rare Disease Day 2012, I thought I’d share a D.I.Y. post to help out people living with IV access and central lines! I hate disorganized bags. And forgetting medical supplies when leaving the house. I often find myself digging through bags behind me in my wheelchair, trying to find a saline flush,...
My Rare Disease Story: Living with Mitochondrial Myopathy

My Rare Disease Story: Living with Mitochondrial Myopathy

I joined the The Global Gene Project for a BLOG HOP to help promote awareness for the upcoming Rare Disease Day on February 29th, 2012by sharing my story about living with mitochondrial myopathy.  In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. What does the...