The non-profit organization, Cure SMA, is launching an international patient survey so that it can address some of the issues surrounding spinal muscular atrophy (SMA) treatment. Find out about seven care areas for supporting patients with SMA. Cure SMA is inviting patients and caregivers to complete a survey…
Social Clips
Winter is a perilous time if you have a compromised immune system, but you can’t stay alone inside for four months. You have to get on with your daily life, and just hope you don’t succumb to other people’s bugs and illnesses. However, there are some foods that can help you avoid catching a cold…
According to the Daily Mail, Lexi Pacini from Colorado has made incredible progress while using Spinraza. Lexi’s parents felt something was amiss with their little girl when she failed to meet the same development milestones her older sister had. At 11 months old, Lexi still hadn’t learned to crawl so they took her to…
Spinal muscular atrophy (SMA) is a genetic condition that affects a child’s range of movement due to the ongoing degeneration of muscle tone. There are three main symptoms of the disease, the severity of which will depend upon the type of SMA the patient has: Type 1 presenting the most severe…
A recent study group has interviewed mothers with SMA to establish if they had any problems with pregnancy and the birth of their children. Newborns in North Carolina to receive free genetic testing. There is limited information available to SMA patients who wish to start families, so the findings…
In this Fight SMA video, Dr. Nanci Yuan talks about the role of cough-assist machines in the treatment of children with spinal muscular atrophy (SMA). She explains that the cough-assist machine is used primarily for two functions: to clear mucus and for chest expansion. Find the answers to five of the…
Patients with spinal muscular atrophy (SMA) will need support care in various different areas, from healthcare to daily life. To help you prepare, we’ve put together a list of some of the different support care areas you can expect to come into contact with if you or a loved one has…
This video from Nemours Children’s Hospital shows the effects of the drug nusinersen (Spinraza) on a young spinal muscular atrophy (SMA) patient. Find out more about nusinersen (Spinraza) in the webinar. Three-year-old Asher Camp from Florida was diagnosed with type 1 SMA when he was six months old,…
Finkle type spinal muscular atrophy is a form of SMA that develops in adulthood as opposed to childhood. Dr. Richard Finkle was the first physician to describe the condition in 1962 and the disease took his name. Find out more about some of the issues adults with SMA face.
Starting in 2018, newborns in North Carolina will be able to undergo free screenings for genetic diseases. Although babies in America are tested for some genetic diseases, the screening doesn’t extend to all genetic disorders as the cost would be astronomical. Find out the answers to five of the most commonly asked…
