Alan Beggs, PhD, Professor, Boston Children's Hospital

Johann Bohm, PhD, Researcher, Institut Génétique Biologie Moléculaire Cellulaire

Ana Buj Bello, PhD, Group Leader, Genethon

Martin "Casey" Childers, DO, PhD, Professor, University of Washington

Sabine de Chastonay, PhD, Research Associate, Cure CMD/CMDIR

Soma Das, Ph.D, Professor Director, Clinical Molecular Genetics Laboratory, University of Chicago 

Jim Dowling, MD, PhD, Researcher and Neurologist, Hospital for Sick Children

Casie Genetti, MS, Genetic Counselor, Beggs Laboratory Boston Children's Hospital

Michael Goldberg, MD, Neuroradiologist, Allegheny General Hospital and President, RYR-1 Foundation

Hernan Gonorazky, MD, Clinical and Research Fellow, Hospital for Sick Children

Mike Lawlor, MD, PhD, Researcher and Neuropathologist, Medical College of Wisconsin

David Mack, PhD, Researcher, University of Washington

Matt Patterson, President and CEO, Audentes Therapeutics

Suyash Prasad, MD, Senior Vice President and Chief Medical Officer, Audentes Therapeutics

Markus Renno, MD, Pediatric Cardiology Fellow, Vanderbilt University

Barbara Smith, PhD, Physical Therapist/Researcher, University of Florida

Barbara Wuebbels, RN, Vice President of Patient Advocacy, Audentes Therapeutics

 

 

 

Recently, we shared an opportunity to connect with researchers from Nationwide Children's Hospital at the Family Conference, which you can read about in one of our previous newsletters here.

 

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 [email protected].  

In our last newsletter, we shared that the team from the University of Florida will be at the conference to perform research breathing tests. You may read the flyer for the study at www.mtm-cnm.org/respiratory-study.html

If you are interested, please email  Lee Kugelmann at   [email protected] or Terry Sexton at [email protected]   for more information and to schedule a time to have the breathing tests. There are only 7 or 8 time slots left, so please contact them as soon as possible.

While the MTM-CNM Family Connection is committed to connecting families to research and resources, we are equally committed to connecting families to deeper relationships with each other and with the wonderful doctors and researchers.

In this spirit, one of our fun conference traditions since the 2011 MTM-CNM Family Conference is the Talent Show, which takes place after dinner on Saturday night!

This will be a wonderful time for families and researchers to mingle in a friendly setting and enjoy each other's unique gifts! You might want to sing a song, tell a funny story, play the kazoo, act out a skit, blow raspberries, etc.--the point is to just have fun with it! We encourage everyone to participate!

Please contact us via the conference email,  [email protected], with the heading "Attn: Shannon Mashinchi Re: Talent Show" to sign up your family or group! 

Don't be shy! Go ahead; sign up now and you can think up your skit/talent later!