I was born in 1963 and live near Rochester, Minnesota, US. I have seven siblings; five of us have GNEM.

“If you don’t fight, you’ve already lost” is my slogan. I do not fight against the disease, but for a happy life and a good quality of life.

Rushab, GNEM Patient. Read his story here.

"I was properly diagnosed in January 2016 with what doctors called HIBM (Hereditary Inclusion Body Myopathy/Myositis) now known as GNEM but I was affected by my rare condition in 2012 when I started falling down for no reason at all."

Mona is a GNEM Patient and PAPM and her daughter is a carer as well as an United Youth Ambassador for NDF.

Hi! My name is Valenee, I am 36 years old and I am a Primary School Teacher. I am British and live in London, UK. My parents are Indo-Caribbean from Trinidad and Tobago. I was diagnosed with HIBM (GNE Myopathy) in 2010.

Prior to having symptoms I used to dance, exercise and swim. I also enjoyed shopping, travelling, and cooking.

Roberta, GNEM Patient and Certified Patient Advocate. Read her story here.

"The hardest thing for me is to accept it and it's still difficult to show myself with it in public. Everybody is vain. In addition, it is the uncertainty of how far the disease will progress. Realizing in one morning that something that worked a short time ago doesn't work today."