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About MyFSHD

If you found us because you or a loved one has been clinically and/or genetically diagnosed with facioscapulohumeral muscular dystrophy (FSHD), or you suspect FSHD, or you just have questions and need some answers, MyFSHD is here to help! We're here to inform the worldwide FSHD community about all aspects of FSHD and provide the opportunity for people to take part in FSHD research testing. At MyFSHD, you'll find info on many topics, including: ~ Obtaining no-cost FSHD research testing no matter where you live in the USA or around the world. ~ Important, often overlooked clinical aspects of FSHD. ~ Ongoing research to develop FSHD therapeutics. ~ FSHD genetics, epigenetics and inheritance. ~ The different types of FSHD. ~ FSHD pathogenic mechanisms. We offer you a unique opportunity to understand your own, personal FSHD by connecting you with the Peter and Takako Jones Lab (University of Nevada, Reno) that performs genetic and epigenetic analysis of the FSHD region of your genome using the DNA in your saliva. They will walk you through the results of your research testing, making sure you understand what it all means. MyFSHD presents info about many aspects of FSHD in different formats and a bit more in-depth than you may be used to, as we would if teaching a class in each topic (but there is no exam!). Go as deep as you want and feel free to ask questions. We are not a fundraising organization, and you will not be solicited. We just want to help educate you about your and your family’s FSHD, as well as FSHD in general so you can be empowered to ask informed questions, better understand the clinical and therapeutic landscape, hold people accountable, and become effective advocates for FSHD, with no pressure and at no cost to you. Visit MyFSHD.org. Tune in to MyFSHD Podcast with Dr. Peter Jones and guests (Spotify, Apple, Google, Amazon Music, Audible - search MyFSHD). Stop by Facebook: Facebook.com/MyFSHD.org.

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