Who we are

If you found us because you or a loved one has been clinically and/or genetically diagnosed with FSHD, or you suspect FSHD, or perhaps you just have lots of questions and need some answers, we are here to help!   

Here at MyFSHD, you will find information on many topics, including:

• Obtaining no-cost research testing available to you no matter where you live in the USA or around the world, which will provide you confidential information on your (or your family’s) FSHD status.
• 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.
• And much, much, more.

At MyFSHD, you will see we are a little bit different. First, we offer you a unique opportunity to understand your own, personal FSHD by connecting you with the research laboratory that performs genetic and epigenetic analysis of the FSHD region of your genome using the DNA in your saliva. Then, we walk you through the results of your research testing, making sure you understand what it all means and what to do next.

In addition, we present information about many aspects of FSHD albeit 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. Again, we are here to help and be responsive to your needs.

Finally, we are not a fundraising organization, and you will not be solicited. We just want to help educate you about your own (and your family’s) FSHD as well as FSHD in general so you can be empowered and better informed to ask better questions, better understand the clinical and therapeutic landscape, hold people accountable, and become better advocates for FSHD, with no pressure and at no cost to you.