2015 Group Photo
MTM-CNM Family Connection
Newsletter
August 2015 v.2


We are so happy to share the above group photo from the 2015 MTM-CNM Family Conference. Thank you, Sergio Vazquez, for again braving the climb up a ladder in order to capture this huge gathering of our MTM-CNM community!  What a powerful picture of togetherness in strength and in hope.

Read on, for more exciting announcements and fun things we'd like to share with you!

The 2015 MTM-CNM Family Conference Program!
We are deeply appreciative of MTM mom, Patricia Ocampo, for her beautiful work and generous time investment in designing and creating the MTM-CNM Family Conference program again this year. 

We must also send a big hug and "thank you" to Emi for being patient while his Mom, Patricia, and Dad, Sergio, gave of their talents for the benefit of all the other families.

Click the image to peruse the conference program, which contains stories from our amazing families, bios about our researchers, and the itinerary of the entire weekend! 
Videos from the Conference!
More videos have been posted on our MTM-CNM Family Connection YouTube page!

Thank you, Mark Ward, for taking the time to record, edit, and post the following talks which were given at the 2015 MTM-CNM Family Conference in Chicago this past July!

These videos are great resources; please watch and share!

Alan Beggs, PhD
Alan Beggs, PhD "Getting Our Bearings" Intro to Myotubular and Centronuclear Myopathy
H. Gonorazky, MD
H. Gonorazky, MD "Natural History and Clinical Aspects of MTM/CNM"


Alan Beggs, PhD
Alan Beggs, PhD "Drug Discovery with Zebrafish with CNM"
Suyash Prasad, MD
Suyash Prasad, MD "Pathway to Clinical Trials in MTM"

Johann Bohm, PhD
Johann Bohm, PhD "Genetics of Centronuclear Myopathy"
Johann Bohm, PhD
Johann Bohm, PhD "Cross Therapy for MTM and CNM"

You may subscribe to our YouTube channel for more great videos like these - more yet to be added!

Audentes receives Orphan Drug Designation by FDA and EMA
Audentes Therapeutics posted a press release yesterday:


This is a valuable step forward, which will potentially make the road to clinical trials and treatments a little smoother.

We invite you to watch these videos from the 2015 MTM-CNM Family Conference of Audentes CEO, Matt Patterson speaking about the company and Barbara Wuebbels, VP of Patient Advocacy, discussing patient advocacy, in addition to Dr. Suyash Prasad's presentation above as Senior VP and Chief Medical Officer at Audentes.

Matt Patterson, CEO Audentes Therapeutics
Matt Patterson, CEO Audentes Therapeutics
Barbara Wuebbels, RN
Barbara Wuebbels, RN "Audentes Therapeutics Patient Advocacy"

We look forward to sharing more news, videos, and opportunities for involvement with you in the future!
 
Sincerely,
 

The MTM-CNM Family Connection
MTM-CNM Family Conference Planning Team
In This Issue
Conference Program
Conference Videos!
New Audentes Press Release
Final Vote to Name the Traveling Turtle!
Supporting Spanish-Speakers
MTM-CNM Family Get-togethers
Final Vote to Name the Traveling Turtle!
We have narrowed down the list of names for the Traveling Turtle to the top three most popular names: Ajax, Magellan, and Myo!

 Please visit our website to read the meanings behind the names and vote on your favorite name for the Traveling Turtle!
Apoyo Para Hispanohablantes!
(Support for Spanish-speakers)
Recently, members of our community have recognized the need to have a Facebook group geared towards Spanish-speaking families with MTM or CNM. The requisites of the group are that 1) you either have MTM or CNM or a family member who has it, and 2) that you can communicate in Spanish. 

Please share the group, called Miopatia Miotubular (MTM) y Miopatia Centronuclear (CNM) with anyone who might need it! 

Nuestra comunidad ha reconocido la necesidad de formar un grupo de Facebook para apoyar a las familias de habla hispana con MTM y CNM. El grupo se llama "Miopati­a Miotubular (MTM) - Miopatia Centronuclear (CNM)." Por favor comparte.

Los requisitos del grupo son: 1) que el socio en perspectiva tiene MTM-CNM o tiene un familiar con la condición y 2) que puede comunicarse en español .
 
Continuing the Connections!
Reese and Declan!
Reese and Declan
 While the conference takes place biannually, our mission to promote family connections extends beyond that one event.

We love to see how the bonds formed through our community network play out in many ways, such as family get-togethers.

The adorable picture above was taken when the Garland family and Hair/Marmon family met up in Ohio last week!

If you would like to share your get-togethers with others in our MTM-CNM family, feel free to post them in our conference group on Facebook:
 facebook.com/groups/mtmcnmfamilyconference!
 
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