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We are Thankful for YOU! Thanks for taking the time to check out our newsletter! We've got some fun updates and stories and also opportunities for you to help MTM-CNM Family Connection!
Read on and enjoy! |
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Myo the MTM-CNM Traveling Turtle
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| Myo and friend at Statue of Liberty! |
Myo was "hatched" at the 2015 MTM-CNM Family Conference in Chicago, Illinois with the mission to travel the world, visiting members of the Myotubular & Centronuclear Myopathy community, to help us all stay connected.
Since then Myo's travels have taken him to Boston, MA with the Ward family and San Francisco, CA to visit Audentes. He took his first international trip to United Kingdom for the 20th International Congress of the World Muscle Society! After his return, he took a trip through Silicon Valley, visiting LinkedIn, Google, and Facebook headquarters.
His next trip was to the home of the Wood family in the Bronx, NY. He had a lot of fun exploring New York City and making new friends. One amazing coincidence was that while at the Statue of Liberty, Myo ran into another traveling turtle from France! See their #shellfie!
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Social Media Testimonial--Jackie
Can a hashtag change your life?
It absolutely can, according to our CNM community's own Jackie Smith. When searching on Instagram for photos labelled with the hashtag #myotubularmyopathy, Jackie connected to another MTM mom, Marie Wood. That began a conversation between the two of them, which opened up into a wider conversation when Marie connected Jackie to the network of MTM/CNM families on Facebook.
Since then, Jackie has been able to meet and get to know many families through online networking and also had the opportunity to bond with some of them personally at the 2015 MTM-CNM Family Conference! Recently, Jackie pursued genetic testing, which has successfully provided her with a more accurate diagnosis and strengthened her connection to the people in our community who can very closely relate to her experience, struggles, and joys. Read the article about Jackie's genetic testing
here
!
Jackie's story is a great reminder of the impact that social media can make when used for good. Please spread awareness of our community on social media platforms, such as Facebook, Twitter, and Instagram. In addition to #myotubularmyopathy and #centronuclearmyopathy, the MTM-CNM Family Connection uses the hashtag #mtmcnmfamily.
Now let's see how many more people we can get connected!
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Carving and Costumes for a Cause
One time of year when our kids (and parents) show that they can shine with creativity and a little ingenuity is during Halloween.
Our real life superheroes really know how to strut their stuff! Thank you to everyone who participated in our October MTM-CNM Family activities by changing your profile picture, sharing our website, and posting to raise awareness about MTM and CNM and MTM-CNM Family Connection!
Make sure to visit our conference
Facebook group--if you haven't already!--to see all the great costumes and family fun!
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Thankfulness for MTM-CNM Family
When life is difficult--and we
all
know what that's like--it might take a little extra effort to remind ourselves of the things for which we are grateful. Yet in the midst of a trying diagnosis and all that it entails, we can still be thankful for the precious individuals, affected by MTM and CNM, who bring us together and inspire us every day.
We are also thankful for the love of our children, parents, grandparents, aunts, uncles, neighbors, and friends. We are thankful for teachers, administrators, and therapists, who go the extra mile and collaborate with us in bringing out our or our children's potential. We're thankful for social workers, counselors, spiritual guides, and others who seek to encourage wholeness in our bodies, hearts, and minds. We are thankful for the doctors and researchers who are called to bring the light of knowledge and healing to this beloved community. We are thankful for all the people who contribute to the team effort of living well with a medically-involved condition.
We are thankful for the pioneers in our MTM-CNM world, the ones who've paved a way and given the ones to follow much hope. We are thankful for the advocacy groups promoting research over the years that have gotten us to this exciting place and time. We are thankful for the young families with newly diagnosed babies, for reminding us of those sweet--sometimes bittersweet, but mostly sweet--memories of our own children when they were just starting out on this adventure of life.
Our team especially wants to thank our families for their enthusiasm and commitment to the MTM-CNM Family Connection mission. Without you, we would not be able to do what we do. Your individual fundraising efforts and the ways that you spread the word about the work that is happening here is a great help to us. We thank you all for having confidence in our team and allowing us to continue to serve you in planning the Family Conferences and encouraging connections to resources, research, and relationships.
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As Black Friday, Cyber Monday, and Giving Tuesday approach, please keep the MTM-CNM Family Connection in mind. See links below to our Bravelets, AmazonSmile, and Zazzle store pages.
Your gifts and support mean so much to our community!
Sincerely,
The MTM-CNM Family Connection Team!
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On Giving Tuesday (December 1st), Bravelets will double their donation to $20 (usually $10) for every Bravelet sold for MTM-CNM Family Connection!
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Purchase MTM-CNM Bravelets!
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Cyber Monday, Black Friday are coming. Make that online shopping count!
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MTM-CNM Family Connection on AmazonSmile |
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Spread awareness, snag great Cyber Monday deals on the Zazzle store!
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Give A Little Bit!
#GIVINGTUESDAY
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