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Dr. Nuria Carrillo discusses “GNE Myopathy: Two Decades of Progress – Much Accomplished, Much Still to Do”.

 

(September 25, 2020)

Dr. Paul Martin discusses "Building the Tools to Develop and Optimize a Gene Therapy Program for GNE myopathy".

 

(September 11, 2020)

Dr. Carmen Bertoni discusses "Progress Towards Developing a Cure for GNE Myopathy: Building a Strong Program Toward Achieving a Common Goal" 

 

(August 28, 2020)

Dr. Alok Bhattacharya discusses "Development of therapy for GNE Myopathy: Possibilities and Global Access"

 

(August 21, 2020)

Patrick Tierney, MPT, PT discusses "It's All About Function: The Role of Physical Therapy in the Functional Management of People with Neuromuscular Disease" 

 

(August 14, 2020)

Amy Curran and Tara Voogel discuss "Adaptive Devices to Increase Independence in Everyday Life with GNEM"

 

(August 7, 2020)

Dr. Gretchen Kubacky discusses "Exploring Intimacy & Physical Connection for GNEM Patients and their Partners"

 

(July 31, 2020)

Dr. Sepideh Tabibian discusses her journey, "From Personal Trauma to Triumph: Lessons on overcoming emotional and physical limitations"

 

(July 24, 2020)

Imad Kazim and Magesh Ghiware discuss "Assistive Technologies for people living with GNEM"

 

(July 17, 2020)

Sogol Ash, MS discusses "Nutrition for an Optimized Life" 

 

(July 10, 2020)

Dr. Monkol Lek & Katherine Koczwara discusses “Research Update on Collected GNEM Patient Samples”

 

(June 26, 2020)

Dr. Tahseen Mozaffar & Carol Gelbard, LCSW discusses “Multidisciplinary Clinics (virtual and in-person) for GNE myopathy” 

 

(June 19, 2020)

 David Klements discusses “NN109-MaGiNE* trial: Background and updates in the time of COVID-19”  *ManNAc in GNE Myopathy

 

(June 12, 2020)

Dr. Stella Mitrani-Rosenbaum discusses "From Gene to Therapy: Challenges in GNE Myopathy - The need for animal models".

 

(June 5, 2020)

Dr. Noah Weisleder discusses "Targeting Membrane Repair in GNE Myopathy"

 

(May 29, 2020)

Dr. Kelly Crowe discusses "Moving Towards a Biomarker for GNE Myopathy Gene Therapy"

 

(May 15, 2020)

Dr. Marjan Huizing discusses "NIH Research Studies for GNE Myopathy" 

 

(May 22, 2020)

Dr. Monkol Lek & Dr. Angela Lek discuss  "Exploring the Potential of Gene Editing as a Therapeutic in GNE Myopathy"

 

(May 8, 2020)