Stress. I feel like everyone can relate to being overwhelmed. How can life not be overwhelming at one point or another, right? Throughout my childhood and young adulthood, I had always considered the idea of being overwhelmed as something that meant you just had too many things to do and not enough time to get it all done before another task or responsibility got added to your pile. As I have matured and entered into what science deems “middle adulthood”, and even though that Read More ➜
In some of my other posts, I mention having had health issues most of my life. Let me preface by saying that I never had to endure anything as horrible as childhood cancer or some life threatening or debilitating disease as a child. I did, however, have health conditions that, in their time, were not as well-known as they are now. I also want to acknowledge that standards of care are vastly changed since my childhood, but it will explain where science and medicine were at that time and how far Read More ➜
3/15/2024: This is the first post I’ve written in a while. If you’re a new reader, The Foundation for Casey’s Cure was started in 2019 to find a cure for a rare form of muscular dystrophy my daughter, Casey, has inheritied from her dad. It’s an ugly disease. An ugly, ugly, disease with a life-shortening end. And her family members, even her new grandson, may have inherited it. A life-shortening ugly disease. Imagine living with that… it’s why, as her mom, I Read More ➜
LaGrange, GA: On June 17, reporter Amanda Peralta interviewed Casey about the $500 donation Casey’s Cure Foundation received from the sale of art/sculpture/crafts made by students at Hillside Montessori School. Watch the interview here: https://www.wrbl.com/top-stories/lagrange-woman-receives-unexpected-donation-from-school-her-son-attended/Read More ➜
March 22, 2022 I’ve started something new. I’ve started a podcast. I plan to interview patients, caretakers, patient advocates… anyone affected by muscular dystrophy. I hope you’ll tune in and check them out. We’re not on any podcast channels… yet. But stay tuned… I’m sure we’ll get there. Casey’s Cure PodcastsRead More ➜
After an event… Do you crash? March 5, 2022, Crashing after an event. I crash after an event. Do you crash after an event? I’m just wondering, does anyone else ‘crash’ after an event? I mean, I just organized an event for Rare Disease Day. It wasn’t even a fancy or complicated event. It was a matter of 3 weeks’ worth of work, filling out the right paperwork, ordering signs, scheduling postings on SM, and then showing up and hoping others would show up too. It didn’t require months of Read More ➜
To Representative Ferguson From: Christine G. Duane, Executive Director, The Foundation for Casey’s Cure, Inc. RE: The Rare Disease Community of Georgia Date: March 2, 2021 Dear Representative Ferguson, On Tuesday, March 1, I had the opportunity to speak with your staff member, Robert Redding. The purpose of our conversation was to provide him with information about why you, Rep. Ferguson should support federal legislation that will improve access to care, services, and research that will Read More ➜
By Chris Duane, Casey’s mom… So often I want to write about how it feels to take on the project of finding a treatment and ultimately a cure for my daughter’s rare form of muscular dystrophy. But I also think that you may wonder about our goals; Where are we going? What is your donation money being used for? Why is it important to donate to our cause? Hopefully, this blog post will be a start at answering some of those questions. You may well ask, “What makes her disease Read More ➜
Sometimes we can forget how important it is to be part of something; a sense of belonging to a group. With COVID being so in the forefront of everyone’s lives, a sense of community when we are forced to be isolated for self-preservation, has become more important than ever and ever harder to find. Suffering (oh if you only knew how much I loathe that word) with a rare disease has left me feeling so isolated even when I am completely surrounded by my family and friends. It is a feeling Read More ➜