After months of writing letters, sending emails and visiting with NY state and local representatives, we now have received the City of Albany, NY Office of the Mayor, Gerald Jennings, Proclamation encouraging residents to join in observance of Charcot-Marie-Tooth Neuromuscular disease Awareness Month.
In addition, last evening all 15 members of the City of Albany Common Council cosponsored the resolution for CMT Awareness Month sponsored by one of our support group members, Council member Dominick Calsolaro. I had the opportunity to speak and personally thank the Common Council after Dominick presented the sealed resolution to me.
Also, the NY state resolution was singed on June 17th by Governor Cuomo.
Working with the CMTA, support group leaders across the country have been successful in obtaining proclamations to raise awareness of Charcot-Marie-Tooth disorder. I would like to encourage everyone with a rare disorder to get involved. Write a letter, send an email, pick up the phone and call your representatives encouraging them to join in raising awareness and in seeking funds for treatments of rare diseases.
IF WE DON’T HELP OURSELVES, WHO WILL?
- Maryland’s Patient & Family Conference Attracts International Audience (cmtnyus.wordpress.com)