MTM-CNM Family Conference Announcement 06/18/2015
MTM-CNM Family Connection

Matt Patterson and Emi Vasquez

Connecting Families to Research:

 

An important part of the mission of MTM-CNM Family Connection, Inc. is the commitment to help connect MTM & CNM families to researchers and research opportunities in our community.  Since 2011, the Conference has provided opportunities for individuals with MTM & CNM to enroll onsite with teams of researchers and to actively participate in research studies.  This in turn helps to accelerate the pace at which research teams can collect data and enroll participants in important studies for our community, while collecting data over a single weekend that would otherwise take months or years to collect, if teams were to arrange individual visits and travel with patients and families.  

Once again, we are excited to help create this connection between researchers and the MTM-CNM patient community.  As research teams receive IRB approvals for data collection at our 2015 MTM-CNM Family Conference, we will be sharing with you this information in our newsletters for your consideration.  In this current newsletter, we share the following study from Nationwide Children's Hospital and Audentes Therapeutics:

 

 
New assessments to test the ability to move in individuals with XLMTM  

Nationwide Children's Hospital is looking for X-Linked Myotubular Myopathy (XLMTM) and non-affected individuals to test a new video-game assessment to see if it is a good tool to measure how well they can move.  Individuals able to move their arms will play special video games and to do some common tasks, like stack things, write, and pick up coins. Movement of individuals who are not able to move their arms will be recorded while they are lying on their back. These individuals do not have to do any special movements.  This testing can be as short as 5 minutes or can be repeated up to three times and last 15 minutes.

  

In addition, another assessment that measures how well an individual can move, called the CHOP-INTEND, will be used.  This assessment will take approximately 30 minutes.

  

If you agree to both tests, it may take up to 1 hour and will be completed at the MTM-CNM Family Conference.

 

If you would like to participate in these assessments, please contact Tristen Moors, from Audentes Therapeutics, for more information or to sign up for a spot (Thursday, July 23 evening and Friday/Saturday, July 24-25):

415.660.7221 or tmoors@audentestx.com.
 

 

 

The MTM-CNM Family Conference 2015 will take place in Chicago, IL from July 24-July 26! Please register soon if you haven't already. Hope to see you there!