CMT Awareness Month 2015

CMT Awareness Month 2015
Recently, I had the opportunity to speak over the telephone with Bethany Meloche. During our conversation we discussed her history of diagnosis, her involvement with the Charcot Marie Tooth Association (CMTA), and the Charcot Marie Tooth Awareness Month 2015.

According to Ms. Meloche, she was the first in her immediate family to be seriously affected by the neuromuscular disease Charcot Marie Tooth (CMT). She was formally diagnosed with CMT Type 1A when she was 12, but had symptoms of CMT before that time. Other extended family members also have been diagnosed with CMT, including her late grandmother.

Ms. Meloche first became involved with the CMTA in 2010 as a teenager. Among her volunteer roles, she was part of the CMTA Advisory Board as a youth liaison. “I got involved with the CMTA when I was 18 because I was looking for volunteer opportunities. I heard about the CMTA at a conference. I was excited because their research program [STAR] promised to make a huge impact not only in my life but in the lives of people that I care about.”

After graduating from college, Ms. Meloche took a full-time position with the CMTA as their Director of Social Media. In that role, “I manage all of the social media accounts, including facebook and twitter. My job is to communicate about what the CMTA is doing and to provide individuals with CMT resources to make their lives better.”

Not long after last year’s successful CMT Awareness Month 2014 finished, organizers for CMT Awareness Month 2015, including Ms. Meloche, began planning for 2015 events. Throughout September, the CMTA and the CMT community educates the public, raises awareness, and raises funds for research for the neuromuscular disease Charcot Marie Tooth.

According to Ms. Meloche, “there are lots of fun things planned. An intern at the CMTA, Yohan Bouchard, initiated the Go Blue as a CMTA fundraiser, encouraging people to raise money as a dare to die their hair blue for the CMT. Individuals all over the country are ‘Going Blue,’ getting creative and spreading the word about CMT.

“Also, individuals in the CMT community are encouraged to take the initiative to tell people about CMT, what it means to them. Use social media to post pictures and create videos, funny to serious, that show how CMT affects them.”

According to Ms. Meloche, individuals across the U.S. are also encouraged to write to their state governors. After explaining CMT, people are encouraged to ask their governor to proclaim September 2015 to be CMT Awareness Month in their state. A sample letter is available on the CMTA website (see Resources below). So far, over a dozen state governors have issued such proclamations! (I’m still waiting to hear back from Governor Snyder in the State of Michigan.)

Public Service Announcements are also available on the CMTA website. Individuals can ask their local stations to play the PSAs.

In addition, according to Ms. Meloche, “CMT All-Star Events, including walks, cycling events, and swims will be held all across the country. I’m holding an event in Michigan, a walk and celebratory picnic to raise funds for the CMTA.” Other events will be held as well: Find out more on the CMTA website (see Resources below).

According to Ms. Meloche, everyone can find a way to get involved. She encourages individuals to “get creative, use what you know to raise awareness and money for CMT research.”

In that spirit, I have decided to use the books that I have published over the past couple of years as a fundraiser. For the next five weeks (August 24, 2015 through September 30, 2015), all proceeds from the sale of my books, the Like a Flower Grows devotional series (Volumes 1 through 3), will be donated to the CMTA. In addition, I will match the proceeds from the first 50 copies sold. These books are available in ebook and paperback formats. In these books, I discuss (among other topics) coping with CMT from a spiritual perspective. (Use the link to Amazon below to find the books).

So, find a way to get involved in Charcot Marie Tooth Awareness Month 2015. Find ways to help the CMT community to spread awareness and raise funds towards research towards better treatments and a cure for CMT!

Resources:

CMTA.org, (2015). CMTA Awareness Month 2015. Retrieved on August 24, 2015 from https://www.cmtausa.org/cmt-awareness-month-2015/ .

CMTA.org, (2015). PSA on Charcot-Marie-Tooth just released! Retrieved on August 24, 2015 from https://www.cmtausa.org/?s=PSA .

CMTA.org, (2015). Request an Awareness Month 2015 Proclamation. Retrieved on August 24, 2015 from https://www.cmtausa.org/news/request-an-awareness-month-2015-proclamation/ .




You Should Also Read:
Learn more about CMT.
Read about my Like a Flower Grows devotional series.
Did you know that if you can contact the White House directly about advocacy issues?

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