THE SPEAK FOUNDATION IS AN INTERNATIONAL ORGANIZATION FOR LGMD
Are you newly diagnosed with Limb Girdle Muscular Dystrophy? If so, your starting point is here. This webinar explains the basics of LGMD and helps the individual living with it.
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.
Many individuals with LGMD have genetic test reports that are complicated. Despite knowing the specific genes that cause LGMD subtypes, diagnostic uncertainty remains for many patients. We know that over 50% of patients with LGMD receive unclear results from their genetic testing. In this educational webinar, we share important information about genetic test results. This is part one of a two part educational webinar on this topic.
Part Two on Genetic Test Reports and Understanding VOUS with Monkol Lek, PhD. Understanding VOUS is something that individuals with LGMD symptoms find confusing. This educational webinar helps you to understand more about genetic test results.
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.
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.
Sign up to be included in the Limb Girdle Muscular Dystrophy Patient Network where you will receive cutting edge research updates from the leading experts in the world such as the GRASP LGMD consortium and also be invited to hear about new clinical trials. When you sign up here, you will also receive the free LGMD News Magazine if you live in the USA. Anyone can join the LGMD Patient Network.