THE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHY
The C.A.R.E program stands for Connecting and Reaching Everyone with Limb Girdle Muscular Dystrophy. This program offers educational webinars with information directly from the pharmaceutical and biotech industry to patients. Additionally, this program partners with top level researchers in some of the world's best universities from GRASP LGMD to present the best information on LGMD. Cutting edge research and information about clinical trials with new treatments are presented in our webinars to help individuals with LGMD get connected right from the start.
A hallmark feature of this program is our diligence to locate newly diagnosed patients living with Limb Girdle Muscular Dystrophy. To do this, we have developed the LGMD News Magazine which has in every edition, a section for newly diagnosed individuals and how to direct them on where to go and find additional resources about their subtype. The magazine will be published and distributed in December of 2020 and will be sent directly to patient's homes and more importantly will be sent directly to clinics where those individuals are diagnosed. This bridges the gap for doctors and allows them to share an important resource guide with patients and have a handy resource for families struggling to find answers.
ML Bio Solutions is advancing the first-ever oral treatment for LGMD2i – BBP-418 (Ribitol). This treatment may enhance, and partially compensate for, diminished muscle function caused by the genetic driver of the disease. Our panelists are Douglas Sproule, MD (Chief Medical Officer, ML Bio Solutions) and Nicholas Johnson, MD (Principle Investigator for the BBP-418 Lead-in Study).
This webinar highlights potential gene repair approaches with LGMD 2i and 2g, This webinar was held on September 18th, 2020 with CURE LGMD2i. Dr. Charles Emerson and Dr. Scot Wolfe from UMass explained gene editing in this informational webinar. They are doing amazing research out of University of Massachusetts for LGMD 2i and 2g. THANK YOU TO CURE LGMD 2i for sponsoring this exciting webinar.
Part One on Genetic Test Reports and Understand VOUS
Part Two on Genetic Test Reports and Understanding VOUS.
This is the first in a series of educational webinars with the Speak Foundation in conjunction with GRASP LGMD and other partners. Dr. Nick Johnson is our honored guest speaker and he is sharing on the the Effects of COVID-19 on Clinical Trials for Limb Girdle Muscular Dystrophy.
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