Catherine Lheureux has been living with FSHD for several years. Her family has been hard hit by the disease; her father and brothers have all been diagnosed with FSHD. She is a schoolteacher and a mother of a little boy, Yann. To help his mother, Yann designs unique greeting cards to help raise money for FSH research.

Although the loss of strength in her arms and shoulders, and the looming possibility of being confined to a wheelchair, are distressing facts of life for Catherine, they are not her greatest fear:

An invisible opponent is robbing me of my smile. No, it's not what you think. It is not a daily struggle with mundane matters –- bills, job problems, and the like –- that is taking my smile away and making me look sadder and sadder every day. I am not a sad person. I never have been because I find life so interesting and engaging that I rarely stop and reflect on my state of mind. I discovered many years ago that I am losing my smile to a life-long genetic disease with the barbaric name of facio-scapulo-humeral dystrophy which is slowly but surely robbing my muscles of their strength — even those tiny muscles in the corner of my mouth that should pull it up when I am happy.

I may have to stop walking in a few years. It will be difficult to accept, but it can be compensated. I'll become motorized. There are also simple things I have not been able to do for many years, such as change light bulbs; my arms don't stay up for more than a second at a time. I can ask others to do these menial tasks for me though. I have gotten used to asking for help, although it is sometimes hard on me. But what I cannot accept is losing my facial expression. Because nothing and no one will ever be able to compensate this loss.

I still smile a little, but it is a weak smile. Nowadays, when I feel fine, normal, I often get questions such as: Are you tired? Why do you look so sad? I am afraid that human relationships will become progressively difficult because of this weird disease which has been passed onto me by my father, and passed onto him by his mother. I am afraid because I am a teacher, and because communication by words, gestures and facial expressions are essential to my work. If I lose my facial expressions, I know that I will lose my livelihood; it is indeed so difficult for people to be around someone who looks permanently sad. Losing contact with others will make me lose my joie de vivre.

Please help fund research on this long neglected genetic disease. We are still very far from understanding its mechanism, let alone from a cure. I would like to be able one day to thank you personally with a large, beautiful smile.

— Catherine Lheureux