Our Story
The Alliance Against HMERF was started by Christine Duane in 2019 after finding out that her daughter, Casey, had been diagnosed with the same debilitating disease that took Casey's father's life. Chris is dedicated to finding a treatment for all the HMERF patients out there. No one deserves to suffer the same painful fate that faces her daughter and everyone with this debilitating disease. And we are determined to do something about it.
In 2016 everything changed...
Casey was blessed with everything she wanted in life.
Married to her high-school sweetheart and with two beautiful sons, they had their whole lives ahead of them.
But then, in the fall of 2017, Casey was diagnosed with Hereditary Myopathy with Early Respiratory Failure (HMERF) and everything changed.
Casey’s story is much like that of many others who suffer with HMERF. This is a disease that will take her life because the muscles in her body are dying.
I did what any parent would do...
When Casey was diagnosed with this disease, as her mother, I was overcome with grief and despair I’d never known before. I had watched the gradual deterioration Casey’s dad suffered – and Casey had been his primary caretaker during the last and most painful and suffering days of his illness.
She was a trooper. For two years, she went to nursing school by day, and by night she took care of her son Joshua and her dad and studied until 2-3 AM each evening just to get up and do it all over again.
She’s my hero….💕
The grief I feel to this day at the prospect of her painful future truly fills me daily. It also drives me to find a treatment or cure for this ultra-rare form of Muscular Dystrophy.
9 years later and a lot has changed
Initially, when we decided to ‘find a cure’ for HMERF Muscular Dystrophy, we were told that finding a cure would be all but impossible, and finding a researcher? Even more so.
But a lot has changed. We’ve learned a lot about how research works.
We now have an international team of leading neuromuscular researchers working directly with Casey’s tissues, working to uncover mysteries that encompass HMERF.
The goal of this research is to unlock the long standing medical mysteries surrounding the titin protein chain and how the protein controls muscle functioning and how to ultimately repair it.
Our work is ongoing. We encourage you to sign up for our newsletter to learn about our progress.
