|
In 1982, Carolyn Redell, organized the first support group meeting in her New York City apartment. Together with Dr. Robert Lovelace and Dr. Howard Shapiro, Carolyn and others formulated plans for an organization which initially hoped to raise money for research, but which also recognized the need for a patient self-help component. Under the leadership of Dr. Shapiro, that organization would become known as the National Foundation for Peroneal Muscular Atrophy (NFPMA), and, in 1990, it would change its name to the Charcot-Marie-Tooth Association.
Support and Action Groups: A Vital Part of the CMTA Community Today, as the CMTA continues to fund and direct research that will soon lead to treatments for some forms of CMT, and as we continue to educate physicians and provide patients and families with important and useful information, the results of the "action" taken by that first support group are evident in everything we've accomplished.
 That's one reason why, at the First National CMTA Support Group Leader Conference held in March, 2010, our support groups were renamed Support and Action Groups.
In addition to promoting education by bringing physicians and other health professionals together with patients and families, support and action groups will continue to give people with CMT and their families the opportunity to meet with others who are facing the challenges of CMT. And, for many of you, especially if you've never met anyone else with CMT and have felt alone or that no one knows what you've been going through, the opportunity to share stories, experiences, and ideas for coping can be a life-changing experience.
And yet, as important as it is for our groups to play that kind of supportive role, our leaders—now renamed "facilitators" to underline the organizational and collaborative nature of their function—also understand how vital a resource our groups can be for taking action on behalf of the CMTA community.
If not you, then who...?
That we are the strongest advocates for improving our situation is not a new idea, but at the SGL Conference, it was given new life when our facilitators were asked, "If not you, then who...?" Who will take the initiative? Who will raise awareness about CMT in the community? And who will raise the funds needed for CMT research?
Our facilitators left the conference energized and eager to get started, so if you come to our groups looking for help and support, you will find it, but you will also find people who are taking action and creating grass roots synergy to improve the lives of everyone affected by CMT.
How you can get involved:
The CMTA is working hard to provide the services of a support group to everyone, but there may not be a group in your state or area. (You can check the listings for your state and nearby states on our Resources page.) If there isn’t, and if you would like to attend or start a support group in your area, please click here to let us know.
|
