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 quality of life.... By Editorial Team 3 min readBookmark for later
Losing My Best Friend...The consensus was that surgery would have too difficult of recovery and his quality of life would not be there. It was... By Allie Williams4 min readBookmark for laterReactions0reactionsComments1 comments
Making Forever Friends...is making quality friends.... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments0 comments
Personal Care Assistants...We literally are at the mercy of a PCA to do the most simple tasks. Showing up to work is the... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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, it makes our working relationship richer By Allie Williams3 min readBookmark for laterReactions0reactionsComments1 comments
Qualities of a Good SMA Specialist...We asked our team of advocates: What are some qualities that stand out in a good specialist?Mike: Listening to me By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Rare Disease Day...Obviously, anyone who has a disease, especially one that affects the quality of their daily life hopes for a cure.... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
What Is Mental Health?...People living with mental health conditions are more likely to have problems with the quality and amount of sleep they get.... By Editorial Team 4 min readBookmark for later
Power of the Chair...In that sense, the chair is a physical testament to the human spirit, a shrine of resilience! It has a magnetic By Suzanne Cutler2 min readBookmark for laterReactions0reactionsComments1 comments
Who Treats Spinal Muscular Atrophy?...Speech therapists specialize in different aspects of speech, including language and vocal quality. SMA may cause people to have difficulty speaking.... By Editorial Team 4 min readBookmark for later
Editorial Team...Her current role includes administrative and operational oversight of clinical trial start-up, regulatory, conduct, and quality management.... By Editorial Team 7 min readBookmark for later
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 we went to work?... By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments0 comments
Medical Review Board...Her current role includes administrative and operational oversight of clinical trial start-up, regulatory, conduct, and quality management.... By Editorial Team 6 min readBookmark for later
Fear of Death Because of SMA...I even remember hearing the doctors tell me many moons ago that the life expectancy of a child with SMA type 2 was around... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments2 comments
Fears Of Flu and Fevers...Fortunately, I've managed to recover each time, but the mental impact of these illnesses has grown significantly in recent years.... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments0 comments
Everyday Life...For our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems.... By Maryalice Noon2 min readBookmark for laterReactions0reactionsComments0 comments
Honest Look at a Parent’s Heartbreak...their best life.... By Maryalice Noon2 min readBookmark for laterReactions0reactionsComments0 comments
Awarded an MBE for Disability Advocacy...I live in the UK, and my work life mostly consists of activism.... By Michaela Hollywood3 min readBookmark for laterReactions0reactionsComments1 comments
Turning 30...Because of the financial burden of hiring an additional caregiver and after ten years of this tense reality, Mike did some research and found... By Maryalice Noon2 min readBookmark for laterReactions0reactionsComments1 comments
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 what you need to help By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments0 comments