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."

I am Okoma Marie Rose, I am Ivorian, I am 33 years old and I have GNE myopathy.

The day I was informed of my rare genetic disorder, the future seemed quite foggy but one thing was very clear, and that was a voice coming from within that my life would not be the same.

Dr. Suleyman Kus, GNEM Patient and Certified Patient Advocate.

"I was born in Japan, raised in Japan, and live in Japan. I did a muscle biopsy, genetic testing, etc. Then, a few years later, I also did genetic testing of my parents. So, GNE myopathy was confirmed. I have depression as a complication. And I keep taking my medicine. I go to the hospital regularly. I currently use a reclining electric wheelchair."

Dr. Suleyman Kus, GNEM Patient and Certified Patient Advocate.

I dislike the words: “disease” or “illness”, I always represent myself as someone who is handling a unique situation in my everyday life while I live with GNEM." Maya, GNEM Patient and Patient Advocacy Program Manager.

"This might be the first time that I am telling my detailed story and battle with HIBM disease."

Kelly, GNEM Patient and Certified Patient Advocate.

Stephen, GNEM Patient and Certifed Patient Advocate.