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Past AMDA Webinars
In Utero ERT Webinar
Title: In Utero EnzymeA protein that helps the body carry out chemical reactions. Replacement Therapy for Lysosomal Storage DiseasesA group of diseases in which substances build up inside lysosomes because the body cannot break them down properly.
Date: Friday, September 16, 2022
Time: 1 PM / 2 PM ET
Speaker:
Jeniffer L. Cohen, MD, Assistant Professor of Pediatrics at Duke University
Webinar Overview:
Dr. Cohen will provide an overview of the importance of early treatment in lysosomal storage diseases, the principles, and methods behind in utero therapy, and will present data from the first patient with infantile onset Pompe diseaseA severe form of Pompe disease that begins in infancy and often affects the heart and muscles. treated with in utero enzyme replacement therapy.
Aquatic Physical Therapy Webinar
Title: Aquatic Exercise: Applications for 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: August 26, 2022
Time: 1:30 PM CT / 2:30 PM ET
Speaker:
Dr. Kendra Lucas, PT, DPT, Aquatic Physical Therapist at Kettering Health, Ohio
Webinar Overview:
The unique properties of water provide surprising benefits for individuals struggling with gait difficulty, muscle weaknessA loss of strength that can affect movement, posture, and sometimes breathing., cardiorespiratory impairments, balance problems and other symptoms associated with Pompe disease. Aquatic physical therapy offers a safe alternative to land-based programs. The water’s buoyancy off-loads joint pressure, allowing you more freedom to move with less energy exertion. Join Dr. Lucas to learn much more about how aquatic exercise can help you stay active and healthy so you can live your best life.
AMDA Zoom Webinar With Sanofi
Title: POMPE REGISTRY: 18 YEARS OF LEADERSHIP AND CONTRIBUTIONS
Date: Monday, April 11, 2022
Speaker:
Joseph Bender, MD, MBA, Global Head of Rare Disease Registries
Danielle Dong, ScM, CGC, Global Operations and Advocacy Lead Rare Disease Registries
Webinar Overview:
The Sanofi Genzyme Pompe Registry is a global, observational, and voluntary program designed to track natural historyThe way a disease changes over time without treatment, or as it is observed over time. and outcomes of patients diagnosed with Pompe disease.
*After multiple conversations with Sanofi, the AMDA regrets to inform the Community that the recording of the recent AMDA Webinar on the Sanofi Pompe Registry will be removed from the AMDA website on May 31, 2022.
However, as a result of these conversations, the AMDA is pleased to say that Sanofi has committed to developing educational material regarding the Registry. We hope that this will be available soon, and will keep the Community posted on developments.