Respiratory Care and Ventilation for Spinal Muscular Atrophy...Hypoventilation during sleep is an early sign of breathing difficulties. Respiratory care is important for survival and...
Losing My Best Friend...The consensus was that surgery would have too difficult of recovery and his quality of life would...reactions1comment
Personal Care Assistants...We literally are at the mercy of a PCA to do the most simple tasks. Showing...reactionscomments
Qualities of a Good SMA Specialist...We asked our team of advocates: What are some qualities that stand out in a good...reactionscomments
Finding Humor in the SMA-PCA Bond...Building trust, keeping the laughs rolling, and facing the heartache isn't just good for a quality life, reactions1comment
Rare Disease Day...Obviously, anyone who has a disease, especially one that affects the quality of their daily life hopes...reactionscomments
What Is Mental Health?...People living with mental health conditions are more likely to have problems with the quality and amount of sleep...
Power of the Chair...In that sense, the chair is a physical testament to the human spirit, a shrine of...reactions1comment
Who Treats Spinal Muscular Atrophy?...Speech therapists specialize in different aspects of speech, including language and vocal quality. SMA may cause people to...
Editorial Team...Her current role includes administrative and operational oversight of clinical trial start-up, regulatory, conduct, and quality management....
Grandparents Help Child with SMA Live Life...Both Zelda and I were working full-time. Who was going to take care of the children when reactionscomments
Medical Review Board...Her current role includes administrative and operational oversight of clinical trial start-up, regulatory, conduct, and quality management....
Fear of Death Because of SMA...I even remember hearing the doctors tell me many moons ago that the life expectancy of a...reactions2comments
Everyday Life...For our firstborn son, the first five years of his life were pretty much routine. reactionscomments
Awarded an MBE for Disability Advocacy...I live in the UK, and my work life mostly consists of activism....reactions1comment
Day in the Life Without Your PCA...Being that they are your aid on a regular basis they should have a pretty good idea of...reactionscomments
Embracing The Challenges...One of the most profound transformations in my life has come from embracing the practice of...reactions1comment
