MYOTUBULAR MYOPATHY & CENTRONUCLEAR MYOPATHY
Family Conference
Yes, we can!
to the homepage of the MTM-CNM
Family Conference 2009!!!
NEWS FLASH! NEWS FLASH! NEWS FLASH!
The MTM-CNM Family Conference to be WEBCASTED LIVE on July 25- 26, 2009 !!!
To participate in the conference on these days, live via your computer click here
Former NFL Lineman, Paul Frase, to utilize video conferencing to speak about son's rare muscular disorder to families worldwide.
to find out more, click here.
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Our purpose is to unite all families who have been affected by Myotubular Myopathy and Centronuclear Myopathy- because there is STRENGTH IN NUMBERS. We also seek to inform these families- because KNOWLEDGE IS POWER.
Currently, a Family Conference is being planned to gather all families affected by MTM/CNM for fun and fellowship, and to give them clear, up to date information regarding current research and treatments for the disease! (more details below)
This will be an exciting opportunity to meet other families, bond with them, and create some life long friendships! It will also be an important opportunity to meet and learn from some of the researchers who are hard at work to find the answers for us that will lead to the cure!
To read stories about families affected by Myotubular Myopathy and Centronuclear Myopathy, click here.
Click below to view photos of MTM families
The MTM/CNM Family Conference will be held
July 24-26, 2009, in Houston, Texas.
Click Here to add your family's story to the Myotubular Myopathy Family Network (MTMFN) Pages, or to see other family stories!
Shout Box:
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Keep informed- subscribe to our site!!
Registration
Hotel Registration
MTM/CNM Awareness Bracelets- GET YOURS TODAY!!!
The MTM/CNM Awareness Bracelets are here, and they are going like hotcakes!
Click Here to get Your Bracelet Today!
The point of the bracelets is to raise awareness about the rare muscle disorders Myotubular Myopathy (MTM) and Centronuclear Myopathy (CNM). In an effort to help raise funds for the family conference, we are asking for a donation of any amount.
SIBLINGS!
A conference just for the siblings of affected children will run concurrently with the Family Conference. The Sibling Conference is being headed by Stesha Heselius-Mashinchi. Stesha, also a sibling of an affected child, wants to connect with all siblings (even if you won't be able to make it to the conference). She's giving a shout out to all other siblings, asking them to contact her at: tumbleweedchica7@comcast.net
Let us Remember...
This is a call for photos and stories of members of
our MTM/CNM community that have passed away.
Photos and stories can be sent to Erin Ward at mtmfamilyconference@gmail.com. Thank you.
GET CONNECTED WITH OTHER FAMILIES THROUGH FACEBOOK!
Connect with other MTM and CNM families on Facebook! Click my badge below to become friends with me. Mention MTM or CNM and I will hook you up with other families in our community!
Connie Rarick Guinn's Profile
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