The Tennessee House of Representatives on Feb. 27 unanimously passed a resolution urging the Tennessee Department of Health to create a reporting system to track Charcot-Marie-Tooth Disease (CMT), a common inherited neurological disorder affecting an estimated 2,800 Tennesseans. Sponsored by Rep. Dennis Powers, R-Jacksboro, House Joint Resolution 120 emphasizes the importance of better data collection […]
The Tennessee House of Representatives on Feb. 27 unanimously passed a resolution urging the Tennessee Department of Health to create a reporting system to track Charcot-Marie-Tooth Disease (CMT), a common inherited neurological disorder affecting an estimated 2,800 Tennesseans.
Sponsored by Rep. Dennis Powers, R-Jacksboro, House Joint Resolution 120 emphasizes the importance of better data collection to help the state allocate health care resources more effectively.
Powers shared his personal connection to the disease with members on the House floor.
“We don’t know how many people in Tennessee have been affected by this rare disease. I know a lot about it because I, too, was diagnosed in 2011,” Powers said. “CMT is a disease that attacks your peripheral nervous system, and there is no cure for it.”
Charcot-Marie-Tooth Disease impacts approximately one in 2,500 people nationwide. Accurate data on CMT cases could boost Tennessee’s ability to secure federal research grants and attract specialized care centers.
Grammy-winning artist Linda Davis also spoke to members of the General Assembly about how CMT has impacted her family.
“When someone you love has a disorder like CMT, you do everything you can to learn, to help and to hope,” Davis said. “For my family, CMT is the common enemy we have faced for decades.”
Davis’s brother-in-law and nephew both have CMT.
The resolution calls on the Tennessee Department of Health to use existing electronic health record systems and resources to voluntarily report CMT cases, requiring no additional state funding. The department would also provide an annual progress report to the relevant House and Senate committees.