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As most of you know, at 7 months, Liv was diagnosed with Nemaline Myopathy (NM), a rare neuromuscular disease that makes basic life tasks such as breathing, swallowing, coughing, sitting and walking difficult, if not impossible. Liv just turned 5 years old and remains a silly, sassy and determined little girl. Despite her immense challenges, she faces each day with a smile, looking forward to making her brothers laugh, playing with her friends, and dressing up as her favorite character, Darth Vader.
However, Liv's life is markedly different than most children her age. At age 5, Liv lacks any independence or ability to move on her own. She cannot sit up in bed, get up from a chair, stand or walk without assistance. She fatigues easily and can't keep up with her friends. Liv still needs a feeding tube for some of her nutrition and her oral weakness causes speech difficulties. Liv cannot cough forcefully enough to clear her lungs so a minor cold could be life threatening for her. Life expectancy for those living with NM is greatly reduced due to respiratory complications. This is something we try not to think about often.
Over the summer, A Foundation Building Strength (AFBS) board members met with the world's leading NM and congenital myopathies researchers. Identifying promising scientific technologies and specific areas of need, AFBS recently put out a call to the scientific community. Muscle disease investigators from around the world sent in proposals that range from exploring small molecules, to the latest gene therapies, to cutting-edge gene editing. Our scientific advisory board is currently reviewing these proposals, and with your help in the upcoming weeks, select research projects will launch this year.
AFBS remains the only non-profit worldwide dedicated to finding treatment for NM. With your help, we can find treatment to better Liv's life and those with NM.