February 21, 2017
RARE Disease Day
"I love someone RARE!"

RARE Disease Day is a time to raise awareness of rare diseases among our families, friends, neighbors, acquaintances...basically everyone we know! 

It's so important to increase the visibility of the RARE disease community to the general public and also our legislators so that we can ensure our loved ones and all of those with rare diseases are properly cared for.

So in that spirit, we would love to see families in our community change their profile pictures to either the generic purple ribbon pictured here or a personalized one with a photo of your CNM or MTM warrior. Visit http://www.mtm-cnm.org/rare-disease-day.html for instructions and a downloadable template. Then leave the awareness ribbon as your profile pic throughout the week until February 28 so that you can show your love for our RARE CNM and MTM families.

Wear Blue for the Cure!
Community Collaboration on RARE Disease Day!

We invite our MTM-CNM families to join Where There's a Will There's a Cure, the Joshua Frase Foundation, the Myotubular Trust, the MTM-CNM Family Connection, and ZNM Zusammen Stark in a special RARE Disease Day event to raise awareness about our specific RARE community by being Blue for the Cure. 

To participate, simply wear BLUE on February 28 to help raise awareness for CNM/MTM. Then post a picture of yourself wearing blue on the event page and tell us why you are Blue for the Cure! 

Please also invite your family and friends to join us in being Blue for the Cure. Share with hashtags:  #blueforthecure  #RareDisease   #raredisease2017  

**Thank you to Melanie and Dan Whiston of Where There's a Will There's a Cure for creating this "colorful" event to promote awareness of CNM and MTM.**

Rob, Becky, Riley, and Reese!
MTM Warrior Reese & Family!
Family Efforts Supporting the Conference!
Thank You Garland Family For Your Generosity and Solidarity with our #mtmcnmfamily

Hi there!

A little known fact about the Garlands is that Rob is a nationally ranked Slot Car Racer.  As a matter of fact, he will be representing the USA in Germany for the World event in May.  When we found out the MTM-CNM Family Conference was going to be held in Nashville, Tennessee, we thought it would be a wonderful opportunity for our Slot Family to lend a helping hand to our #mtmcnmfamily.  

Rob raced in the 2017 Hillbilly Nationals this past January also in Nashville, and he sponsored a Race Class in honor of the MTM-CNM Community.  While he did not bring home a victory, he did bring home a very generous donation from our racing community.  All the funds contributed will be donated to help fund our amazing conference in July!  

....And it doesn't end there!  The fundraiser generated so much interest that we are doing it again in March at the Midwest Nationals in Flint, MI!  The response we have received from our friends and acquaintances has been OVERWHELMING!  We are so excited that we can offer this donation to the Conference!  Can't wait to see everyone in Nashville!

The Garlands, 

Rob, Becky, Rilee, and Reese

Joy and Marie with their boys!
More Family Efforts!
Thank you!

We'd also like to thank Joy Holmes, aunt to MTM warriors Reid Wood and Paley Wood, who raised $340 for our conference through her LuLaRoe clothing fundraiser in December! Thanks also to the folks in our community and allies who participated! 

Our conference planning team of volunteers is deeply grateful for all the families who take the initiative to raise funds for our biennial conference! Remember, this is not a one-man show--we're all in this together!!

If you have ideas about a fundraiser that your family could do to support our conference, please contact any member of our team: Erin, Marie, Mark, or Shannon!
You Can Be a Part of Something Great
Support our 2017 MTM-CNM Family Conference, Nashville!

Even if you aren't able to plan or organize a fundraising event for the MTM-CNM Family Conference, you can still help us raise money by simply creating a Crowdrise page and sharing through social media and email! 

It only takes a few clicks to set it up...and you can start by clicking on the above photo!
Join our #mtmcnmfamily in Nashville this July!
Reserve Your Rooms Now!

We're only a few months away from the 5th biennial MTM-CNM Family Conference in the United States. This is an event you do NOT want to miss!!

To secure the discounted rate of only $134/night at the beautiful, newly renovated Nashville Airport Marriott, you can book now

Keep in mind that the earlier you book the better, since this assists us in our planning, and that will make everything run smoother for all of us when we meet in July!

Please visit us at  http://www.mtm-cnm.org/2017.html to see more details about the hotel, tentative agenda, travel tips for flying and driving, and more.