Imagine, if you will, that you’re on your usual morning call with your daughter. She lives in Georgia and you live in New Jersey. In order to stay in touch, you talk to each other each morning as you each drive to work. It’s usually a fun conversation where you talk about ‘stuff’; nothing particular, just life in general. But on this particular day, she greets you, “Hey mom. I have some news. I’ve been diagnosed with muscular dystrophy, the kind that Dad had.”
I am speechless. I don’t know what to say. We were told that Casey couldn’t get it, only my son had the possibility of inheriting the broken gene. Yet here I am, trying to make some sort of coherent response. My heart is broken and I feel like someone has just hit me in the chest. To have the painful fate of her dad, who she took care of until his death in 2004, land at my daughter’s doorstep… I cannot begin to tell you how my head spun. My heart was… just broken to pieces. I knew what I would do next. I would find a cure.
In 2016, my daughter Casey, at the age of 35, was diagnosed with an ultra-rare form of muscular dystrophy. MD. Not MS, but MD. MD= Muscle Death. And once her muscle tissues die, there is no recovering them. Muscular Dystrophy is a slowly progressive deterioration of the muscles throughout the body. Casey’s form, HMERF MD (Hereditary Myopathy with Early Respiratory Failure) attacks some of the skeletal muscles first while simultaneously attacking her diaphragm and rib cage muscles; the ones that let you breathe… cough. The inability to recover dead muscle tissue is what makes time so very important. Time is of the essence and time is what she doesn’t have. To look at her, she looks great! She’s beautiful, funny, and a wonderfully caring nurse. But… this disease has a mind of it’s own and I needed to race to find a cure.
To know me is to know that there was absolutely no way I would stand by and let this horrible, painful disease take my daughter’s life without doing everything in my power to stop it or at least slow it down. So I set out to find a cure. I started the Foundation for Casey’s Cure 501(c)3 in 2019 and got to work.
I knew nothing of the non-profit world but I can say that when I announced to my friends and family that I was going to find a cure for Casey, I got a lot of head nods, ‘that’s great Chris’ all the while knowing they were walking away thinking that ‘she must be kidding… find a cure? Wishful thinking for sure.”
Well, here we are, in 2023, and we’ve just signed a contract with a lab who is beginning a study on Casey’s cells. This first study, an amenability study, will cost $9,000 and will take anywhere between 60 and 90 days to complete. Finding a cure or a treatment is indeed a very expensive proposition, which is why I am here, talking about our work, my family, and the wonderful people in LaGrange who have supported our work even though the odds have been stacked squarely against us.
I think that’s why I was nominated for this interview. My persistence and drive have taken us from starting with nothing to becoming a major fundraising powerhouse. And I will fight to find a cure for HMERF until my last breath- for my daughter, her children and grandchildren who may have had the bad luck of getting this gene, too.
The photo included is of Chris, Casey and Christopher attending the Rare Impact Award Ceremonies in May, 2023 sponsored by NORD, the National Organization for Rare Disorders.
Note from FACES:
(Please be sure to visit the following if you would like to learn more about Casey and Chris’s fight for her daughter:
http://www.caseys-cure.org or Chris’s face book pages caseyscuremom or
If you feel moved to make a donation you should be able to do so through one of these sites)
About Chris Duane
Q: Please tell us a little bit about your family.
My family consists of my second husband, Bob, whom I married in 1990, my two children, Christopher and Casey, and his two children, Justin and Jesse. We had a whirlwind life raising two families in one house, but we pressed through it all and are looking forward to celebrating our 33rd wedding anniversary in October. We hail from Point Pleasant, NJ and are avid boaters. We moved to LaGrange in 2019 after I retired from teaching for 27 years and Bob retired from the Marine Surveying business. I am fortunate to have a loving and supportive husband who has stood by my side through all of the trials and tribulations that have taken us through these years. We are also fortunate that our four children are married and each have two wonderful grandchildren! Eight in all! Christopher lives in New Jersey with his wife Danika and their two children Dalton and Aubriegh. Christopher works as a executive in the solar energy field. Casey is a nurse at Wellstar West Georgia and anyone who has visited Wellstar Pulmonology has had the pleasure of meeting Casey and being taken care of by her skilled hands. Her husband, Josh, works for the City of LaGrange and they have two children, Joshua and Ethan. Justin lives in Charlotte North Carolina with his wife Jocelyn and their two children, Albert and Alphonse. Justin owns a coin business and Jocelyn will take her oath for citizenship in the coming weeks! Jesse, last but not least, lives in Louisiana with his with Alicia and their two children, Cole and Lily. Jesse is a Warrant Officer in the Coast Guard, with 22 years of service. We couldn’t be more proud of our family!
Q: Please tell us about your current, past, or future career. What do you love most about what you do?
I started my work career as a teacher and taught for 12 years. Unfortunately, I couldn’t support myself and my children after my divorce so I moved into the financial services industry where I played many roles from sales, to training, to writing manuals and eventually working my way up to Wall Street and my dream job! But fate had a different role for me. The 9-11 attack in Manhattan found me downsized and out of work at age 51. In the Wall Street world of work, being over age 50 is… well… not something most employers saw as a plus on my resume. So I did what most teachers do, I went back to school and got a Master’s Degree in Communication. Fortunately, my Dean saw that my return to Manhattan was a long shot and he let me take some electives from the School of Education. This allowed me to find a job in 2005 with a wonderful mentor and district. I stayed there until I retired in 2019. Along the way, however, I decided I wanted to be an administrator. So I went back to school to get yet a second Masters Degree in Administration. But again, fate had a different plan. I retired in 2019 and we moved to LaGrange to support my daughter and her family. I spend my days reading research papers and attending conferences so I can move this process along as best as I can. I love what I do because my family is the most important thing to me and working on a cure for Casey is what gets me up and running every day. The cure is out there. We just have to find it.
Q: What advice would you give to people?
Love what you do and you won’t have to work a day in your life. Love your family because tomorrow is given to no one.
Q: Where do you see yourself in 5 to 10 years?
I can only hope that within my lifetime, I will have worked and led to the discovery of a treatment not only for Casey, but for others who suffer from rare diseases like hers.
Chris Duane & Our Community
Q: What are a couple of your favorite restaurants in our community?
Of course being from New Jersey, we love Karvela’s, Vennuci’s, The Nutwood Winery, Brickhouse Grill and Mare Sol, to name a few!
Q: How long have you lived or worked in our community?
My husband and I moved here in 2019 to be closer to family and support them as they move forward in this fight against muscular dystrophy.
Q: What is your favorite thing or something unique about our community?
As I’ve said, I’m ‘from away’. And it’s not always easy to find the way into a small town. But I have been fortunate to have met wonderful people through the Chamber of Commerce, through the Chatties, and through my wonderful neighbors on Wellington Drive. They’ve shown me what it means to have an open heart and feel welcome in a new town.
Q: If you could choose anyone that is alive today and not a relative; with whom would you love to have lunch? Why? And where locally would y’all meet for this lunch?
If I could meet anyone I think I’d most like to meet one of the founding fathers- George Washington, Thomas Jefferson, or James Madison. We’d of course have lunch at the Nutwood Winery!
For Fun
Q: What is one of your favorite movies? TV shows?
My Cousin Vinnie. (Joe Pesci is from New Jersey and was sometimes seen in town or at a restaurant. He too loved the Jersey Shore.) Right now: Sweet Magnolias. Endeavor and All American.
Q: (Even for friends or family), what is something interesting that most people don’t know about you?
My Motto: It always seem impossible until it’s done. I also teach on the Floating Classroom with the Chattahoochee Riverkeepers.
Q: What would you rate a 10 out of 10?
Good Food
Q: Who inspires you to be better?
My friends from my neighborhood who have supported me throughout my move and my work toward finding Casey’s Cure.
Q: Finally, what 3 words or phrases come to mind when you think of the word HOME?
Family, the ocean, great friends
