Advocacy and Outreach News

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 WEEKThe 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 AWARENESSI 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: sag_upstateny@cmtausa.org

Look at our Advocacy Resources:

Send a letter to the governor:


 

 

Read the latest CMT news and announcements from the CMTA

Attend a local CMT support group in your area

Find CMT awareness, advocacy or outreach events

DONATE to the CMTA and help us find a treatment and eventually a cure for CMT with our STAR™ research initiative.

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About cmtny

Due to symptoms of Charcot-Marie-Tooth (CMT) neuromuscular disorder, I left my career as a pharmacist. Then, with the support of the CMTA, founded the Upstate NY CMT support and action group. I write to raise awareness of this genetic peripheral neuropathy. In addition to writing and advocating for others with CMT, I also co-coordinate our Art de Cure gallery at CPO, where we have raised over $21,000 for CMT research so far.
This entry was posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy and tagged , , , . Bookmark the permalink.

One Response to Advocacy and Outreach News

  1. Pingback: Yes, that hurts! | Living Well with CMT (Charcot-Marie-Tooth)

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