IMPORTANT NEW HELP FOR LGMD FAMILIES AFFECTED BY COVID-19
Download these items to present for LGMD Day on the Hill. The info sheet allows you to explain your cause and what LGMD is all about. You will attach this to your email or letter you send out. The letter is a template for you to write your own congressman or congresswoman with a premade message.
The third item is how to find your legislators. Remember, we explain how to use these item during our LGMD Day on the Hill virtual event.
All you have to do is insert text and you are ready to go!
In PART TWO on this topic, Monkol Lek, PhD presents on the important topic of genetic test reports and understanding VOUS. This webinar aired on September 4th, 2020.
Please visit our YouTube channel to access all our educational platform with curated LGMD educational webinars from the world's best researchers. Our platform is located at: https://www.youtube.com/channel/UCGcb4iyAkk6jdNkMhPhupCg/videos
Check back to rewatch the simulcast which already aired live
"Introducing a New Limb-girdle Muscular Dystrophy Natural History Study"
On Friday, September 11th, 2020 (from 12pm—1pm EST) Sarepta Therapeutics presented their new natural history study for the limb-girdle muscular dystrophy community during this online simulcast webinar hosted by the Speak Foundation. This natural history study will begin enrolling participants this summer, and Sarepta will provide an overview of the natural history study in addition to resources to stay connected to community resources and updates during this webinar.
Find Out More About Sarepta Therapeutics:
Sarepta Therapeutics is a global biotechnology company on an urgent mission to engineer precision genetic medicine to reclaim futures otherwise impacted or cut short by rare diseases, including Limb-girdle muscular dystrophy. Sarepta’s current 6 programs focus on: sarcoglycans (LGMD 2C, LGMD 2D, LGMD 2E), dysferlin (LGMD 2B), anoctomin 5 (LGMD 2L), and calpain-3 (LGMD 2A). For genetic testing information and other resources, please visit LimbGirdle.com.
Cycle Two for the COVID-19 relief program is now closed. Thank you to all our generous sponsors! TSF has given out thousands and thousands of dollars in direct support to families living with LGMD in 2020.
This program was funded by a generous grant from Sarepta Therapeutics and private donors. Cycle two ended on August 19th, 2020. Congratulations to families who were helped by this grant.
The mission of the Speak Foundation is to improve the quality of life for those living with muscular dystrophy and to provide a voice for those living with rare diseases.
Our amazing team of volunteers are committed to helping others. Think you would be a good fit? Contact us!
Since 2008, TSF is the first patient run organization for muscular dystrophy. Thanks to the helping hands of this amazing community!
To speak up for those without a voice and to provide hope to those living with muscular dystrophy
Sign up to hear from us about events affecting our community
Copyright © 2020 The Speak Foundation - All Rights Reserved.
The Speak Foundation is a 501c3