Day 16 of 30 Days of MD: The Speak Foundation

by Ralph Yaniz | September 16, 2019

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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

A post shared by MDNewsToday (@mdnewstoday) on Sep 16, 2019 at 4:46am PDT

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About the Author

Ralph Yaniz Ralph served as the executive director of the Florida Society of Clinical Oncology Foundation in 2016, helping to establish the organization and begin serving the community. Prior to that he worked for AARP, where he was a regional vice president for a decade and, prior to that, the Illinois State Director for four years. In his capacity as the Illinois State Director, Ralph led AARP Illinois in major legislative victories between 2002 and 2006, including the Older Adult Services Act in 2004. Before going to AARP, Ralph was executive director of the Berwyn Cicero Council on Aging. The mission of the organization is to assist adults over 60 in maintaining their independent living with the highest quality of life. He holds BS and MA degrees in psychology from Loyola University of Chicago and worked as a licensed clinical professional counselor in Illinois for three decades. He also holds an MBA degree from Regis University in Denver, Colorado. Ralph has served on numerous boards for nonprofit organizations and in 2018 founded the LGMD2L Foundation to help look for treatments and cures for his form of muscular dystrophy.