Our Story
The Alliance Against HMERF was started by Chris Duane, after losing her husband to HMERF, Chris wanted to help her daughter (Casey) to ensure she didn’t suffer the same fate that her husband and everyone with this debilitating disease suffers from.
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 2016, Casey was diagnosed with Hereditary Myopathy with Early Respiratory Failure (HMERF) and everything changed.
Casey’s story is much like other people with HMERF. 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.
Casey's Story
Casey’s story is much like other people with HMERF. A disease that will take her life because the muscles in her body are dying.
A nurse in the pulmonary clinic at the WellStar West Georgia Medical Center in Georgia, USA, Casey married her high school sweetheart, Josh, and together they have two sons, Joshua and Ethan.
In 2017, Casey was diagnosed with HMERF, and their lives changed forever.
9 years later and a lot has changed
Initially, I was 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 have an international team of leading neuromuscular researchers working directly with Casey’s tissues, trying to uncover the trigger that stops the muscle-making cycle that causes HMERF.
This research could potentially unlock one of the long standing medical mysteries surrounding the titin protein chain and how the protein controls muscle functioning.
