• It’s an ugly disease.
    In Chris Duane
    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 ➜
  • WBLR-On-Your-SideWBLR -On Your Side 6/17/2022
    In Stories & Interview
    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 ➜
  • Hillside Montessori School Raises Money for Caseys CureHillside Montessori School Raises Money for Casey’s Cure
    In Stories & Interview
    https://www.lagrangenews.com/2022/06/02/hillside-montessori-school-raises-money-for-caseys-cure-foundation/  Read More ➜
  • Casey's PodcastInterviews
    In Stories & Interview
    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 ➜
  • I support rare disease dayAfter an event
    In Stories & Interview
    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 ➜
  • Cure Rare DiseaseTo Representative Ferguson
    In Chris Duane, Legislation
    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 ➜
  • Being The Mom
    In Chris Duane, Stories & Interview
    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 ➜
  • Alone…not Alone
    In Casey Duffield, Stories & Interview
    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 ➜
  • Inclusion
    In Casey Duffield, Stories & Interview
    I always want to be so politically correct and proper. I want to be motivating. Inspirational. Selfless. Encouraging. Supportive. And I work so hard to be that person daily. But to be completely honest, some days I just lack the capacity to be that way. I believe that COVID is real.  I believe that the consequences of COVID will continue to be uncovered.  And let me say that I whole-heartedly believe that COVID has long lasting health effects that are unknown and being Read More ➜
  • Keeping The “A”
    In Stories & Interview
    My mom has this phrase… “Anyone can get an A once, but keeping an A? That is hard work.” That is the best phrase I can think of to relate to maintaining a positive outlook.  I think being positive for a moment or an hour is easy; repeating some inspirational quote you read online that rings true. Or having a phrase on your phone as a reminder; having a quote of the day on your desk.  But let’s just call a spade a spade. Feeling positive from a quote Read More ➜
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