My Nonprofit Reviews

My family and I have been involved with the CMTA both as volunteers and clients served. I was diagnosed with CMT 2E 13 years ago at the age of five. I am a first generation CMTer; no one else in my family has the disease. Because of this, when I was diagnosed, my parents knew close to nothing about CMT. The CMTA has been instrumental in educating my family and I about CMT through their patient/family conferences and numerous educational resources. They have also been very helpful in shaping my perspective and view of my CMT. I have had the privilege of attending multiple CMTA youth outings where I spent the evening bonding with other teens with CMT while participating in fun activities such as the Escape Room, bowling, and dinner. I also recently attended CMTA Camp Footprint, an overnight camp for kids and teens age 10-18 with CMT. We participated in many activities such as zip lining, rock climbing, canoeing, nighttime hiking, dancing, swimming, and much more. Both the youth outings and the camp showed me the beauty and hidden gifts that come with having CMT and increased my drive and determination to try new things outside of my comfort zone. I'm so thankful for the CMTA for giving me such empowering, enriching experiences.

Another way that my family and I are involved with the CMTA is through volunteering as Branch Leaders. A year ago, there was no CMTA support/information group for people with CMT in my location so my mother and I decided to start one. We hold multiple meetings a year where we bring in guest speakers from various medical professions and other organizations. Our goal is to provide our members with as many helpful resources as possible. We also hold one fundraiser a year to help support STAR and other invaluable CMTA initiatives. The positive feedback we have received from group members has been incredible. The CMTA has been instrumental in helping us start and maintain the Branch. They are always available to answer any questions or help with anything else we need. They work very hard to ensure the success of each branch.

It is clear from all of my experiences with this organization that they are passionate about their mission and are determined to find treatments and cures for this disease in the future. However, until a world without CMT is the reality, they are committed to helping people live happy, healthy lives with CMT.