Some of you know I have a genetic disorder called Charcot-Marie-Tooth Disease. I’ve traced it through six generations in my father’s family counting myself and my daughter. It has nothing to do with teeth! The name comes from three physician/scientists who first diagnosed the disease in the late 1800s. Two were Frenchmen and one Brit, Dr. Tooth. Here is a brief description of CMT from Wikipedia.
“Charcot–Marie–Tooth disease (CMT), also known as Charcot–Marie–Tooth neuropathy, hereditary motor and sensory neuropathy (HMSN) and peroneal muscular atrophy (PMA) — is a genetically and clinically heterogeneous group of inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. Currently incurable, this disease is one of the most common inherited neurological disorders affecting approximately 1 in 2,500 people  equating to approximately 23,000 people in the United Kingdom and 125,000 people in the USA.
Symptoms of CMT usually begin in late childhood or early adulthood. Some people do not experience symptoms until their early thirties or forties. Usually, the initial symptom is foot drop early in the course of the disease. This can also cause claw toe, where the toes are always curled. Wasting of muscle tissue of the lower parts of the legs may give rise to a “stork leg” or “inverted bottle” appearance. Weakness in the hands and forearms occurs in many people later in life as the disease progresses.”
There are many other possible symptoms of CMT. Learn more here: http://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease
The CMT Association, to which I belong, sent out this announcement today.
GOVERNOR CHRISTIE SIGNS NJ AWARENESS PROCLAMATION – WE NEED EVERYONE’S HELP RIGHT NOW!
As you may or may not be aware, last week Governor Chris Christie (R-NJ) signed a state proclamation for the CMTA proclaiming September to be CMT Awareness Month in NJ. Bethany Meloche (our director of social media) has already posted messages and links on our Facebook and Twitter pages, and this now appears prominently on the main page of the CMTA website.
Governor Christie is easily the most recognizable politician who has taken this step, and it is incredibly important for our organization to barrage him and his office with thanks. If you are on Facebook or Twitter please write about this now (and encourage your friends to share it).
If you’re on FB, start to “follow” Chris Christie first, then when you type in the message you will be able to get him “tagged” in it (so that his office will receive notifications). If you are on twitter, mention him in your tweet (his handle is @GovChristie).
MOST IMPORTANTLY – we need to barrage his office with Thank-You emails. The way to do this is:
- Go to Governor Christie’s website at: www.state.nj.us/governor/.
- Click on “CONTACT US.”
- In the drop-down menu, click on “Requesting Proclamations/Special Letter,” then click “continue.”
- Fill in the information. Under affiliations, write “Charcot-Marie-Tooth Association,” then type in your relationship.
- Write a VERY personal message!
In your message, spare no expense in terms of how personal a cause this is for you. Tell his office where you live, how many generations of CMT are in your family, and how it has affected your life. Most importantly, THANK HIM FOR TAKING A LEADERSHIP ROLE IN SPREADING AWARENESS!
In addition, PLEASE ASK YOUR FRIENDS/CONTACTS to go through this email process as well. Imagine the power of the message if we can get 1000s of emails into his office. We will shortly begin to have correspondence with SAGFs about the importance of this exercise, encouraging them to get the members of their groups to do this (which can be done in 5 minutes)!!
Please participate in this ASAP and share with everyone and anyone who knows how CMT affects you and your families.
To give you an idea about how personal the message should be – here is what Chairman of the Board Herb Beron sent to Governor Christie through his website:
I cannot thank you enough for your recent signing of the state proclamation of CMT Awareness Month. My 13-year old daughter Julia is affected by this disease (although it is typically inherited, there was no family history). She has already endured surgeries on both of her feet, wears daytime orthotics and nighttime braces, and has both hearing & vision loss. Yet, she has an incredibly positive outlook on life. Last year, she spoke in DC at the President’s Council on Fitness, Heath & Nutrition on behalf of CMT patients around the world, and has written blogs about her leg braces. In short, she is my hero.
On behalf of not only my family, but CMT patients/families all over the country – I thank you from the bottom of my heart for taking a leadership role in spreading awareness about this disease.
Bless your family and my warmest regards,
Chairman of the Board
Charcot-Marie-Tooth Association PO Box 105 Glenolden, PA 19036
1-800.606.2682 • 610.499.9264 • fax: 610.499.9267 • http://www.cmtausa.org/