13 yrs, 21 doctors... no known cure. Help Stacy

Thank you for reading this... we are MJ Engler and Jess Carlson. Please consider a donation to help Stacy Murray (our niece/ cousin). Stacy has a very painful and debilitating gene mutation called VCP Disease (Valosin Containing Protein).

Stacy's VCP journey began 18 years ago. After visiting 21 different doctors over 13 years, she came across a geneticist who was finally able to identify the proper diagnosis. VCP Disease is genetically inherited but it came as a shock to Stacy, who was adopted as a baby and had no access to her family medical history. This ultra-rare gene mutation is experienced by about 2000 people across the world. While each person suffers a different set of symptoms, Stacy currently experiences tremors, severe muscle weakness, and bone pain. The muscle weakness makes walking and talking extremely challenging. While a walker and a wheelchair help her to be mobile, each day presents a new safety risk. Because VCP Disease is so rare and the symptoms are so varied, what Stacy may face in the future is unpredictable. Her muscles can continue to deteriorate and affect her respiratory and heart muscles, and frontotemporal dementia occurs in approximately 1/3 of people with VCP Disease.

Our goal is to help Stacy acquire much needed equipment and create a safe environment for her to minimize her risk. Your donation will be used to cover specialized equipment for safe mobility such as ramps, motorized travel scooter, kitchen accessibility modifications, bathroom accessibility modifications, and will help to cover her many medical and prescription expenses.

We thank you for your time and any donation to help Stacy. Her husband Jim and her sons Joey and Sean are especially grateful for your attention to Stacy's safety.

For futher information on VCP Disease please visit https://www.curevcp.org/aboutvcpdisease and

https://www.sciencedirect.com/science/article/pii/S092544390800166X