About Casey's Cure
How did the foundation come about?
The organization is structured as a patient advocacy group; none of the money goes to Casey personally. Your donations are used to spread awareness about muscular dystrophy MD) and support medical research in the MD field.
When her diagnosis was made in 2017, we started looking for a patient advocacy group for her subtype, HMERF. When we found that none existed, we made it our business to start one to raise the public's awareness about Hereditary Myopathy with Early Respiratory Failure Muscular Dystrophy, its progression, and its effect on afflicted patients and families.
For these reasons, the Foundation's mission is multifaceted:
- To be an advocacy platform for patients with rare diseases, like Casey's form of Muscular Dystrophy
- Promote global research on her rare subtype in the Titin protein, where Casey's genetic error lies.
Hereditary Myopathy with Early Respiratory Failure Muscular Dystrophy a progressively debilitating disease caused by weakness and muscle wasting across the legs, hips and respiratory tract. This genetic disease is a rare form of Muscular Dystrophy. Over time, this excessive muscle wasting will result in respiratory and overall physical complications leading to a painful, suffering death.
The average drug cycle is 15 years. Rare disease patients like Casey don't have time for the 15 year drug cycle to save their lives.
And the patients with HMERF MD don't have time on their side because it is a late onset disease. And testing can't be done until there is some manifestation of the disease.
Casey doesn't have time- We need your help today!
And we have to do it quickly - HMERF is a fatal disease...
the science is almost there, we just need money to bring the science to the patients.
Why now?
We need to fund early stage trials NOW - we only have limited time to make this happen.
Why Support Casey's Fight?
Because her fight is everyone's fight... It brings a societal change to all facing muscular diseases. And few of us understand that the legal and legislative fight taking place in our federal and state congressional hallways touch more than just the rare disease community...
- Casey is actively supporting legislative work to improve patient access to services, support, and research at the federal and state levels for all disabled, Medicare and Medicaid patients; what touches one, touches all...
- An Experienced Leader and Lifelong Healthcare Advocate for Muscular Dystrophy Research
- Highly regarded in her patient care work
- Received Accommodation for her outstanding dedication to patient care
- Champion for Patient Rights after seeing how others continue to struggle for needed additional services
- Actively supports community events that celebrate Rare Disease Day Awareness on Lafayette Square in LaGrange GA
- Returning Student to further her nursing studies
