Charcot-Marie-Tooth Association

Who are the people you serve with your mission?

We serve the people who are impacted by Charcot-Marie-Tooth disease. This included the patient and their caregivers. We do this by funding promising research that will develop new drugs to treat and/or cure CMT disease. The CMTA also meets the needs of patients by providing resources such as a quarterly newsletter, (800) info line, literature about CMT, Patient-Family Conferences, Branches, and Centers of Excellence to help support and educate. To help support our younger community of CMT patients, we have started a Youth Council and Camp Footprint. Through participation in a community of youth with CMT, our young people make friendships based on shared experiences and understanding.

How is your organization collecting feedback from the people you serve?

Focus groups or interviews (by phone or in person), Suggestions from the community,

How is your organization using feedback from the people you serve?

To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

What significant change resulted from feedback?

When the COVID pandemic hit, we changed all 'in person' meetings such as Branch meetings and our Patient Family Conference to virtual. We learned that our some in our community prefer virtual meetings based on the attendance numbers at these meetings and feedback from our Branch leaders. We have decided that with future 'in person' events, we will continue to offer a virtual component so all may participate.

With whom is the organization sharing feedback?

The people we serve, Our staff, Our board, Our funders, Our community partners,

How has asking for feedback from the people you serve changed your relationship?

The CMTA was founded as an organization to help people with Charcot-Marie-Tooth disease. By including the people we serve in our decision making over formats of meetings, educational material, different community events, etc, we are better able to serve them. We rely heavily upon volunteers from the community in all that we do. The CMTA is pleased to announce the launch of our Patients as Partners in Research initiative! The goal of Patients as Partners in Research is to advance the work of our Strategy to Accelerate Research (STAR) and enroll the patient community in the critical work of furthering the development of treatments and ultimately a cure for CMT. The CMTA would not be in existence if we did not have our community.

Which of the following feedback practices does your organization routinely carry out?

We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

What challenges does the organization face when collecting feedback?

We don't have any major challenges to collecting feedback,