Our Blog

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

https://www.lagrangenews.com/2022/06/02/hillside-montessori-school-raises-money-for-caseys-cure-foundation/  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 work; not tons of money; just planning… Rare Disease Day this year was on Monday, February 28. And somehow, despite the effort I exerted, which wasn’t anything exceptional, (at least not for me…) I was exhausted. I did manage to hit the email and check up on that on Tuesday, but by 2:00? My brain was ready to check out. I’d decided that on Wednesday, I was going to get into cleaning up the flower gardens in front of my house. I haven’t quite gotten the whole ‘spring’ schedule thing down pat here; I 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 improve the lives of the rare disease community of Georgia, especially within your district. This is the text of my presented speech to him. On behalf of the Rare Disease Community across Georgia and the rest of the United States, 25 million patients are calling for your support. I hope you heed their call on their behalf. Sincerely, Christine Duane, Executive Director of The Foundation for Caseys Cure, Inc. 162 Wellington Drive LaGrange GA 30241 732-300-5708 The text of our call was as 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 subtype rare?” In the medical research field, diseases that have less than 2,000 cases (in the United States) are considered ‘ultra-rare’. You may also ask, how exactly does that help or hinder our ultimate goals? I have come to learn that when the US has an insufficient population of a certain disease, finding funding for it can be super-challenging. But I’ve also learned this year that the FDA doesn’t really like groups of less than, say, 2,000, to be studied 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 like no other. To know that I stand in a group with so few people in the world (that I know of) that you can use all your fingers on one hand to count us all and still have 1 or 2 leftover is unfathomable. This is not the way I wanted to be one in a million!! People ask me how I am doing from time to time. And I am never quite sure how to answer them. I know they mean well and are asking from the good place in their hearts.  But can I tell them the truth?  Or even should I tell them? How Read More

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 discovered daily.  I guess that I just wish someone was looking that hard for me… for my rare disease will ultimately take my life, too. And here’s the story that inspired this posting: I was scrolling through social media and came across a post a friend had made. She was discussing and making bullet points of the hardships that she and her family has been experiencing while she has been recovering from COVID19.  All her statements were and remain valid.  She was discussing how Read More

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 is short-lived.  But staying positive all the time? Hard… very hard. And somedays are much harder than others. When it comes to having a chronic illness that has no treatment (yet), some days are so much more challenging than I expect. We have all had bad days or weeks or even months that overwhelm us with some feelings of hopelessness. But remaining positive when each day feels so different, yet so same, as the day before, well, that’s another matter.   I get through those Read More

With the end of summer here and the wonderful beginning of autumn, the season change brings many mixed emotions for me.  August is the month of my father’s birthday and also the anniversary of his death. I feel those days so intensely now that this disease has made its presence known in my own body. What I wouldn’t give to have 1 day to sit beside him? I am not sure that I would ask him about his disease or even what body part failed him first or what path it took… I think I would ask him what he would have done differently…. Tell him all the things that I could have used his guidance on. Laugh with him. You know sometimes, it’s the small things that really hit me the hardest; like I don’t know what my father’s laugh sounded like. He had spent so much time in the hospital and was trached (the hole in your throat) for most of my life and what time I spent with him, that he would slap his knee and kinda move back and forth in his chair to Read More