Day 16 of 30 Days of MD: The Speak Foundation

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by Ralph Yaniz |

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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 https://www.nationallgmdconference.com and join our community! #thespeakfoundation

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