News for our x-Linked MTM Families
Opportunity to participate in an X-Linked MTM Parent Advisory Board 11/7-11/8 in Chicago, IL
Our family conference team has been asked to share the following announcement from Audentes Therapeutics:

X-Linked MTM Parent Advisory Board **** November 7-8, 2014 Chicago, Il


Audentes Therapeutics, a San Francisco based biotechnology company, is hosting a Parent Advisory Board meeting November 7-8 in downtown Chicago. In keeping with our desire to develop relationships with patient advocacy groups, it is important for us, early on in the drug development process, to gather the opinions of patients, parents, family members and caregivers affected by X-Linked MTM.


Patient Advisory Boards typically involve a small group of participants to allow adequate time for participants to express their opinions. This Advisory Board will consist of 6-8 participants, the Audentes senior physician, a few relevant company representatives and an independent facilitator. We would like 6 to 8 volunteer parents (one parent from each family) of affected boys under the age of 8 years, who can share their experiences and engage in open discussion. The purpose of the meeting is to learn more about how you and your child have been, and continue to be, impacted by myotubular myopathy, what benefits you would like from a new medication, and whether you and your child would be willing to take part in a clinical trial. Attendance does not involve any commitment beyond participation in the meeting.


The meeting will commence with an informal welcoming reception on November 7 followed by the meeting on November 8. Audentes will cover the cost of your transportation to Chicago from anywhere in North America, lodging for November 7 and November 8 and your meals for these days.


If you would like to be considered for participation in the Parent Advisory Board please submit your name, the name and age of your child, and a brief paragraph describing why you would like to participate. Please forward this information to [email protected], who leads the Patient Advocacy function at Audentes.

Applicants will be notified by Oct. 1 so adequate travel and lodging arrangements can be completed.


As the Audentes clinical development program progresses, Audentes will likely host further Parent Advisory Boards during 2015.

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