Day 16 of 30 Days of MD: The Speak Foundation September 16, 2019 by Ralph Yaniz In 30 Days of MD. 0 (0) View this post on Instagram Day 16 of #30DaysofMD Kathryn Bryant and The Speak Foundation Giving a voice for those in the rare disease community and helping individuals with muscular dystrophy find community is why the Speak Foundation started back in 2008. I have had the honor of leading the Speak Foundation for the last 11 years. TSF is a 501 c3 with the mission to improve the quality of life for those living with physical disabilities and to speak up for those who have no voice. I was officially diagnosed with Limb Girdle Muscular Dystrophy type 2i in 2006 and saw a blank space then in the patient community. To date, the Speak Foundation has helped hundreds of individuals living with Limb Girdle Muscular Dystrophy, organized over 12 conferences, and is now also bringing together all forms of LGMD to become a greater voice in the rare disease community. Our passion is to speak up for those without a voice in the limb girdle muscular dystrophy community and in any patient population lacking representation. Too often, patients living with LGMD have gone without hope. Until recently, there were not any treatments in the pipeline for this community. Things have changed in the last five years drastically. We now see huge strides and gains with many in industry excited about future treatments. We see hope for a future! To sign up to be a part of our community, go to our National LGMD Conference website at http://www.nationallgmdconference.com and join our community! #thespeakfoundation A post shared by MDNewsToday (@mdnewstoday) on Sep 16, 2019 at 4:46am PDT How useful was this post? Click on a star to rate it! Submit Rating Average rating 0 / 5. Vote count: 0 No votes so far! Be the first to rate this post. As you found this post useful... Follow us on social media! We are sorry that this post was not useful for you! Let us improve this post! Tell us how we can improve this post? Submit Feedback Print This Page
Prem Shankar says: September 17, 2019 at 11:36 AM Any treatment available for any costs please reply sir my some suffering with DMD Reply
Ralph Yaniz says: September 17, 2019 at 11:40 AM Prem, thank you for your comment. You might want to reach out to the organization below for the latest information on DMD. Wishing you the best. https://www.cureduchenne.org/ Reply
Joanne says: September 20, 2019 at 9:34 PM Are there any online groups available for people with ANO5 Distal Muscular Dystrophy for us to link with? Reply
Ralph Yaniz says: September 20, 2019 at 9:37 PM Joanne, yes. I n Facebook look up LGMD2L. It is a closed group but you can request and I will approve. Also, you should go to the website for the foundation and register. T https://www.lgmd2l-foundation.org/ Reply
Any treatment available for any costs please reply sir my some suffering with DMD
Prem, thank you for your comment. You might want to reach out to the organization below for the latest information on DMD. Wishing you the best.
https://www.cureduchenne.org/
Are there any online groups available for people with ANO5 Distal Muscular Dystrophy for us to link with?
Joanne, yes. I n Facebook look up LGMD2L. It is a closed group but you can request and I will approve. Also, you should go to the website for the foundation and register. T
https://www.lgmd2l-foundation.org/