When Cherry Hill resident Tara Cave tells people she has Charcot-Marie-Tooth Disorder, many of them have no idea what she’s talking about.
Even some nurses and doctors have never heard of it.
“When you tell people you have Charcot-Marie-Tooth, they think you made it up,” Cave said. “They ask, ‘Is that a real disease?’”
Charcot-Marie-Tooth, or CMT, is very real and affects 2.6 million people worldwide. CMT is a disease of the nerves controlling the muscles that can cause people to lose use of their legs, feet, arms and hands.
The lack of public information about the disease has encouraged Cave to raise more awareness about it.
She was able to do this on Monday night, when Cherry Hill Council awarded Cave with a proclamation recognizing September as CMT Awareness Month.
CMT is a disease Cave has been familiar with her entire life. Cave has a mild form of the disease, while her son Jeffrey has a more advanced form. Tara’s father and sisters have also been diagnosed with CMT.
For 16-year-old Jeffrey, the disease has made routine activities such as gym class difficult. There is no cure for CMT, and Jeffrey has struggled with the use of his legs and feet. He has undergone physical therapy to try to strengthen his legs.
“Looking at my son, you’d think he’d maybe just fell and hurt his foot,” Tara said. “It’s not obvious.”
Jeffrey began his junior year at Cherry Hill High School West last week and continues to go to school despite the disease. Tara said the school district has done a great job in understanding Jeffrey’s condition, despite not knowing much about it.
To help deal with the disease and gain ideas on how to better raise awareness, Tara attends support groups in Freehold and Levittown, Pa.
“What they do is you meet other people and they talk about what they’re going through and talk about the different issues they’re having,” she said. “The Central Jersey one also has speakers there.”
It is in these support groups where she received the inspiration to reach out to Cherry Hill Township about raising awareness.
A number of states including New Jersey have signed proclamations the past few years declaring September as CMT Awareness month. Tara thought the best way to raise more awareness in her own community was to ask Cherry Hill to do the same.
The Cave family and a small group of supporters attended the Sept. 8 council meeting to accept the proclamation.
The group achieved its mission of raising awareness just among the members of council. Council Vice President Sara Lipsett and Councilwoman Susan Shin Angulo both said they had never heard of CMT before, echoing a phrase Tara has heard many times in the past.
Tara said awareness for CMT has improved thanks to the help of government and local organizations over the past few years. In addition, her support groups have done their part to raise money and awareness.
“On Sept. 20, the Pennsylvania group is doing a buffet dinner,” she said. “There was also a Riversharks event where part of the ticket proceeds went toward CMT.”
Tara said residents can donate toward the cause through the Charcot-Marie-Tooth Association. The CMTA collects donations to go toward fighting the disease. In 2008, the organization launched a Strategy to Accelerate Research campaign in hopes of fighting the disease.
To donate to the CMTA or learn more about the disease, visit www.cmtausa.org.
