My daughters are thriving, joyful, active, and full of life. They also have a condition that is quietly taking their muscles.

Limb-Girdle Muscular Dystrophy Type 2C (LGMD2C) is rare, genetic, and progressive. It causes atrophy and/or fatty and scar replacement of the shoulder and hip muscles which can eventually affect the heart and lungs. Without intervention, muscle strength declines steadily over time.

Many children need assistive devices by high school. Muscle lost is muscle that does not come back. There is currently no cure.

Progressive disease grief comes in waves… the hill they used to run up, the jump they hesitate before, the tired that comes too soon. You watch, you smile for them, and later you carry what you saw. 

But this is not a story about giving up.

For the first time, there is real momentum against LGMD2C. Gene therapy research is targeting the disease at its genetic root. For the first time in history, four children have been dosed with promising results and encouraging safety data with gene therapy. Unfortunately, the current trial showing this promise has come to a halt due to lack of funding - closing the door at this time for others to obtain this incredible life changing therapy.

Their window for treatment is still open. For all affected with LGMD2c - open and early access to potential life changing therapy means more muscle saved and preserved. This means better outcomes, longer stability, and improvements in quality of life. 

Why this matters right now: Muscle lost before treatment cannot come back. My daughters are strong today. I am fighting to keep them that way, and to help open trial access for kids like them that have time against them; they do not benefit on waiting for potential treatment approval. These trials will help improve the lives of so many, and we need your help!

This fundraiser supports research and trial advancement through CureSCG, a nonprofit accelerating sarcoglycanopathy science. Rare disease research runs on community funding. For children like mine, even a one or two year delay is muscle they will never get back. The treatment only works on active muscle they have. Maintaining active muscle and joint flexibility in the interim is our goal in hopes of a cure one day.

For tax-deductible donations directly to the research mission: www.curescg.org/donate

If you can give, thank you, truly.

If you can’t give today, please share this page.

One share reaches the right person. One donation helps push the doors open. Help us move the science forward.

For my girls. For every family in this fight. Thank you for reading this.