MTM/CNM Family Conference Newsletter
"Let's Make This Happen"
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As we recently announced, the third bi-annual MTM-CNM Family Conference is taking place from July 26-28, 2013 in Bloomington, MN! We're so excited about this important family event and we hope you are too because we need your help


Reid and Javad Supporting the MTM-CNM Family Conference
There are so many wonderful people and groups who have taken the initiative to promote the welfare of individuals and family members of those, who are affected by MTM-CNM. The tireless efforts of such groups as the Joshua Frase Foundation have been instrumental in pushing forward the medical research that will enhance the health of our loved ones with MTM and CNM. We pledge our whole-hearted support to the JFF and other groups who raise funds for medical research, such as Where There's a Will There's a Cure and the Myotubular Trust, and for education and awareness, such as The Information Point for Centronuclear and Myotubular Myopathy

While all of these groups are members of the same "family," we each have our uniquely important purposes within the MTM-CNM community at large and each group is distinct from the others in both its particular mission as well as its finances. The mission of the MTM-CNM Family Conference is two-fold, comprised of a family-networking element and a research-supporting element:

1) With a deep awareness of the unique challenges in having or caring for someone with MTM-CNM, we seek to provide an enjoyable and enriching family-oriented conference experience that educates and unites the individuals and families affected by Myotubular (Centronuclear) Myopathy in supportive friendships and life-enhancing networking opportunities. The conference is also a healing place of remembrance of those who have transitioned out of this life and yet continue to inspire all of us who have loved them and have had our lives enriched by these MTM-CNM "angels." 

2) With hearts full of hope for the future, we seek to connect families in person to the top researchers in potential MTM-CNM treatments in order to get them acquainted with the latest advances in medicine and assistive technology and to get families signed in and registered in the various studies. This conference has proven to be a rare and important opportunity for the researchers themselves to meet in person, brainstorm, and collaborate in fruitful ways. By connecting the researchers with each other and the families with researchers and doctors, who can even perform exams and record data on site, which will enhance and inform their studies, we are actively pushing the medical research forward.

Please continue to support any or all of these groups as you are able and also please consider generously supporting the MTM-CNM Family Conference and our mission specifically through tax-deductible donations made to the MTMRGThe Conference cannot be made possible without our entire community's support!


Family Conference 2011 We need you there!
What would a family conference be without the most important element of all...our families? We understand that the logistical and financial elements of this kind of excursion may be daunting, especially for our newer families, but we are committed to serving you!


Make sure that you join our mailing list if you aren't on it already so that you can keep abreast of tips and pointers that we'll be sharing with the community from some of our more experienced travelers. Join our official conference Facebook group to stay in the know and ask your questions. 

Please make sure that you reserve your hotel room early at the Best Western Bloomington at our discounted conference rate of $129.99. You may call them directly at (952) 854-8200 (or toll free at 800-780-7234) and mention that you are attending the Myotubular Myopathy Centronuclear Myopathy Family Conference. The discounted rate is valid from three days prior to the first day of the conference until three days after the conclusion of the conference.

Also there are ways that you can raise funds to get your individual family to the conference. Often our family and friends want to do something to help but don't know how and may feel really great being able to support your family in attending the conference. You can let your family and friends know that for your birthday or for an upcoming holiday, gift cards for gas or gift cards for one of the vendors/restaurants at the Mall of America or covering one night at the hotel (for $129.99) would be a welcome and helpful gift! 
Be Creative!

As you can see, we are passionate about our mission, yet passion isn't enough to make the conference happen...we need the funds to cover our expenses, such as rental of conference rooms, A/V equipment and technology, catering, family activities, etc. And so fundraising is a great opportunity for you to use your talents and ideas to support the mission. You can begin simply by taking an inventory of any abilities, services, or products that you can sell to raise funds for the conference. Have you got an attic full of things you don't use or need anymore? Then why not have a yard sale! Are you a great baker? Have a bake sale! You can sell 4th of July fireworks like the Sanders family! You can host a fundraising dinner at your home! You can organize an auction through donated items! Use your vocal stylings to raise money through a benefit sing! The possibilities are limited only by your imagination!

If you'd like to try some of these ideas or if you've got some good ones of your own, please contact us either through email or on the conference Facebook page.

Something that we all can do is to forward this email to our friends and family. You can also post links to our donation page on Facebook and Twitter. 
Together we can make the 2013 MTM-CNM Family Conference even better than the last! We wish you a happy and healthy New Year and hope to see many of you in Minneapolis in July!
Warmest regards,

The MTM-CNM Conference Planning Team!
MTM-CNM Family Conference