How many times have you been asked – “what condition do you have” – only to receive a completely blank expression and the words “haven’t heard of that one!” when you tell them!
Even worse than that – what about when it happens when you’re at the doctors or at your neurologist’s clinic!
Awareness is important!
Wouldn’t it be wonderful if everyone – not just the medical profession – knew what Charcot-Marie-Tooth Disease is, like they do for other, rarer, conditions like Duchenne Muscular Dystrophy or Motor Neurone Disease.
All of us in the world’s CMT organisations often hear from people with CMT saying that “it’s not happening fast enough.” “It” represents public awareness and greater understanding for Charcot Marie Tooth disease, effective treatment options, such as physiotherapy and orthotics and hope for genetic treatments into the future – frustration that we have every right to feel. We get frustrated too. But, everyone can push our cause forward by channeling frustrations into opportunities and bringing the community together for strength in numbers – together we ARE stronger.
So, we ask you, people with CMT, carers, health care professionals, policy makers…everyone in our global village, mark your calendars for CMT Awareness Month in September so we, collectively, can make it happen faster!
International CMT Awareness Month is just 6 months away, and we are excited about engaging the public at large in this annual awareness campaign to help us collectively take the conversation level on CMT disease up a few notches! We recognize that CMT disease is a 24/7/365 battle for more than 6 million people worldwide and until a treatment and/or cure is achieved, every month is CMT Awareness Month.
This is an opportunity for the entire community to fire up all engines—and to use all communication resources—to drive the dialogue on CMT so:
- the general public understands CMT better;
- children and people with CMT receive earlier diagnoses and better access to what treatment there is;
- medical professionals engage with people with CMT to improve their care and quality of life;
- urgently needed resources for the CMT community are given a priority, including increased funding for CMT research.
Whether writing to the media on-line or off-line on the impact of CMT, hosting fundraisers, sharing information about CMT with your network of friends, colleagues, and family members, or donating to support programs and research grants to raise CMT’s profile and find a treatment…we need to work together to generate more awareness for CMT!
Whatever you do, every single action—even something as simple as reposting this to your Facebook page—counts and helps our community get the word out about CMT so the public will recognize it.
Everyone who has or cares about someone with CMT has got to stand up and be counted as someone who cares about the issues facing our community. Together—and with your help—we can bring help, hope, and healing to all people worldwide impacted by Charcot Marie Tooth Disease.