AMDA Webinar Program
The AMDA Webinar Program facilitates the exchange of information between the Pompe patient community and professionals that have expertise in the field.
PAST AMDA WEBINARS
NMR Imaging And Spectroscopic Techniques For Diagnosis, Follow Up And Evaluation Of Pompe Disease
Title: NMR Imaging (MRI) and spectroscopic (NMRS) techniques for diagnosis, follow up and evaluation of Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup that damages muscles and can affect breathing and, in some cases, the heart.
Date: Tuesday, January 24, 2012
Speakers:
Robert-Yves Carlier, MD
Pascal Laforêt, MD
David Orlikowski, MD, PhD
Claire Wary, PhD
Webinar Overview:
Utility of whole body MRI in the diagnosis of Pompe disease, utility of 3T MRI and volumetric evaluation of muscular impairment in the follow-up of patients before and during ERT and utility of glycogenA stored form of sugar used for energy. quantitation by Carbon 13 NMR spectroscopy.
Respiratory Muscle Strength Training In Pompe Disease
Title: Respiratory Muscle Strength Training in Pompe Disease
Date: Monday, June 6, 2011
Speaker:
Harrison N. Jones, PhD, BRS-S, CCC-SLP, Assistant Professor, Department of Surgery, Division of Speech Pathology & Audiology, Duke University
Genzyme’s Next Generation Pompe Treatment: Clinical Development Overview
Title: Genzyme’s Next Generation Pompe Treatment: Clinical Development Overview
Date: Thursday, February 3, 2011
Speakers:
Edward Kaye, MD
Alison McVie-Wylie, PhD
BMN-701: Potentially More Effective Treatment Option For Pompe
Title: BMN-701: Potentially more effective treatment option for Pompe
Date: Monday, December 13, 2010
Speaker:
Barbara Wuebbels, BioMarin
Jon Lebowitz, BioMarin
Diaphragm Delivery Of Recombinant Adeno-Associated Virus Acid Alpha-Glucosidase
Title: DiaphragmThe main muscle used for breathing. Delivery of Recombinant Adeno-Associated Virus Acid Alpha-Glucosidase (rAAV1-CMV-GAA) Gene VectorA delivery system, often based on a modified virus, used to carry genetic material into cells. in Patients With Pompe Disease
Date: Tuesday, October 26, 2010
Speaker:
Barry J Byrne, MD, PhD – University of Florida
Autophagy and its Role in Pompe Disease
Title: AutophagyThe cell's internal cleanup system that removes damaged or unneeded material. and it’s Role in Pompe Disease
Date: Wednesday, August 4, 2010
Speakers:
Nina Raben, MD, PhD – Staff Scientist, Arthritis + Rheumatism Branch, National Institute of Arthritis + Musculoskeletal + Skin Diseases (NIAMS), National Institutes of Health, Bethesda, MD.]
WEBINARS FROM OTHER ORGANIZATIONS
- The RDLA (Rare Disease Legislative Advocates) did an excellent webinar on Mental health on May 18th, 2023:
May RDLA Monthly Webinar – YouTube
AMDA TELECONFERENCE PROGRAM
The AMDA Teleconference Program facilitates the exchange of information between the Pompe patient community and professionals that have expertise in the field.
- FDA Expanded Access Program
- Speaker: Richard Klein, FDA Office of Special Health Issues
Date: March 18, 2010, at 1:30 pm CST
To download presentation slides, please click here.
To listen to audio recording, please click here. - Expanded Newborn Screening Teleconference
Topic: How to advocate for newborn screening initiatives in your state
Speakers: Bob Evanoski from the Evanoski Foundation
Date: Monday, January 21, 2008, at 7:00 PM CST - Amicus Conference Call
Topic: Amicus Pompe Summit
Speaker: Mark Lyles, M.D., Jayne Gershkowitz, and Tina Sellers from Amicus
Date: Monday, April 14, 2008, at 7:00 PM CST - Zystor Therapeutics Inc Conference Call
Topic: Glycosylation Independent Lysosomal Technology (GILT)
Speaker: Dr. Jonathon LeBowitz
Date: Wednesday, January 28, 2009, at 7:00 PM CST - Second Teleconference on Insurance Issues
Topic: Getting Insurance Coverage for a Newly Approved Drug
Speaker: Christin Engelhardt from the Health Assistance Partnership
Date: Tuesday, March 21, 2006, at 7:30 pm CST
Download Powerpoint Presentation - Second FDA Teleconference (Part 1)
Speaker: John Hyde, M.D., Medical Team Leader at FDA
Date: Thursday, January 27th, 2005 8:30 pm EST
Download Transcript - Second FDA Teleconference (Part 2)
Speaker: John Hyde, M.D., Medical Team Leader at FDA
Date: Thursday, January 27th, 2005 8:30 pm EST
Download Transcript - Special Trust Funds
Speaker: Theresa Varnet
Date: Thursday, October 28th, 2004 8:30 pm EST
Download transcript - Gene Therapy
Speaker: Dr. Barry Byrne
Date: Tuesday, August 31st, 2004 8:30 pm EST
Download Transcript - The Prevention of Respiratory Complications in Pompe’s Disease
Speaker: Dr. John Bach
Date: Monday, June 21, 2004, 8:30 pm EST
Download transcript - Gene Therapy
Speaker: Dr. Andrea Amalfitano
Date: Tuesday, March 23rd, 2004 8:30 pm EST
Download Transcript
Acid Maltase Deficiency Association
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If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
info@amda-pompe.org
THE AMDA
PO Box 700248
San Antonio, Texas 78270 USA