Why do I believe so strongly in CMT advocacy, awareness and outreach?
Because my mission as founder & facilitator of the Upstate NY CMT Support & Action group is to improve the lives of people with CMT and I can’t do this alone:
- I believe that individuals with CMT have to understand the disorder to successfully manage it.
- I believe that the public, media and policy makers should know about CMT and its devastating effects if undiagnosed and untreated – and the positive outlook for adults who learn to manage their CMT.
- I believe that the thousands of adults who are struggling, unaware that they have CMT deserve to know why they are struggling and that help is available.
For these reasons as the founder and facilitator of the Upstate NY CMT Support & Action Group I continue to advocate for those with CMT, raise awareness about CMT to the public and medical community, provide outreach to individuals with CMT, their families, friends, and caregivers.
I believe in the importance of Education & Advocacy in improving the lives of those of us with CMT. Therefore, along with providing support, information, and sharing resources, I strive every day to raise awareness about CMT throughout the world. Some of our advocacy outreach and awareness initiatives include:
CMT AWARENESS WEEK – The Charcot-Marie-Tooth Association (CMTA) worked to create CMT Awareness Week in 2010. The Upstate NY CMT Support group participated in this Awareness Week by displaying postures, handing out CMT brochures, and manning an awareness table during our fundraising event at the TGIF restaurant in Stuyvesant Plaza, Albany, NY.
I wrote two articles explaining “What is CMT?” which were published in local newspapers; the Times Union, the Troy Record and Pennysaver. Also, I interviewed on television with local health reporter, Benita Zahn.
CMT AWARENESS MONTH 2011- The CMTA is promoting and working with legislators to recognize the entire month of September as CMT Awareness Month
CMT GLOBAL DAY SEPTEMBER 24, 2011- The CMTA has invited other countries to join our efforts in raising awareness
PUBLIC AWARENESS – I continue to submit articles for publication and encourage volunteers to set up displays with CMT brochures, newsletters and fact sheets at libraries, schools, pharmacies, grocery stores etc.
These are just some of our efforts and we invite you to join us…
Volunteer with the Upstate NY CMT group: firstname.lastname@example.org
Look at our Advocacy Resources:
- Muscular Dystrophy Association: www.mdausa.org
- American with Disabilities Act Information: www.ada.gov
Send a letter to the governor:
DONATE to the CMTA and help us find a treatment and eventually a cure for CMT with our STAR™ research initiative.
- Governor Letter requesting Proclamation for CMT Awareness Month (cmtnyus.wordpress.com)
- Am I physically challenged, incapacitated, disabled or just broken? (cmtnyus.wordpress.com)