Tags » Glenda

Inktober Witches 10 - Wicked Witch

Because taking prompts literally is incredibly boring :D
Some of these prompts are obviously steering you towards such uninteresting results  Why draw a normal pointy-hatted cackling witch when you can draw a kick-ass rollar-derby witch instead? 37 more words

Settings, Concepts, And Practice Images

Two NUBPL Families Meet For First Time, 2,000 miles apart

A little over two years ago, we received Katherine’s results for Whole Exome Sequencing (WES), giving us a name, NUBPL, to the disease that was a mystery to her doctors and is responsible for the atrophy of her cerebellum. 818 more words

Glenda

1st NUBPL Foundation Fundraiser

Last year we founded the NUBPL Foundation to elevate NUBPL awareness and research. In February 2015, our daughter was diagnosed with a recently discovered form of Mitochondrial disease named after the affected nuclear gene, … 233 more words

Glenda

Rare Bourbon for Rare Disease Fundraiser

NUBPL is a form of Mitochondrial Complex 1 Disorder. Discovered just a few years ago that mutations of this gene are disease causing (our five year old daughter has two mutated copies of her NUBPL gene – one mutated copy from mom, one mutated copy from dad), our family wants to know more so our daughter can have treatments and/or a cure. 582 more words

Glenda

Rare Disease Day 2017

When Katherine was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. 1,155 more words

Glenda

Bag Ladies

A couple of years ago I got the idea to thank my friends for being my friends by giving them something personal — beyond the cheer, kindness, and thoughtfulness (and occasional baked goods) that I make sure to bring to those relationships. 165 more words

Simple Pleasures