Tags » 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

Walking with Jim...REALLY?

It’s been three years since I walked across America.  I am occasionally asked, “Are you going to walk across America again?”  Right now, I have no plans to do it. 361 more words

2016: A Year in Review

Hands down, 2016 has been our best year since our family was thrust into the world of rare disease.

Unlike previous years, we entered 2016 with an… 847 more words

Glenda