According to a report on postbulletin.com, there are 33 states that have right-to-try laws, giving people with life-threatening illnesses access to drugs that have not yet been approved by the FDA. MORE: West Virginia boy hopes to get Spinraza treatment for SMA. So long as the drug has safely completed the…
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One of Australia’s leading pediatric neurologists is embarking on a mission to visit spinal muscular atrophy patients throughout the country to raise money for the Royal Children’s Hospital. The funds will specifically benefit Melbourne’s Complex Movement Program which aims to provide research and care in one place where all the surgeons,…
While most people associated with spinal muscular atrophy (SMA) are celebrating the FDA’s approval of Spinraza, one man with SMA is sharing a different take on the drug. MORE: Find out about the film which encourages SMA patients to reach beyond their limits. Fifty-four-year-old Ben Mattlin has had plenty of time to…
SMA News Today columnist Brianna Albers describes herself more as a storyteller than a writer. In fact, she wants the outside world to see a storyteller, rather than a person who happens to have spinal muscular atrophy (SMA). MORE: Find out more about Brianna Albers in her first column ‘The…
As a child’s spinal muscular atrophy (SMA) progresses, they may need special equipment to help make life easier for them and their caregivers. Function and mobility aids can help with maintaining a patient’s independence, allowing them to participate in everyday activities. Here are some of the aids that children with SMA…
While few of us choose to become caregivers, many of us are faced with the task if a loved one is diagnosed with a chronic disease. The transition is a strange time for everyone involved, as the nature of the relationship changes for both the caregiver and patient. However, it is…
Following her husband’s frustration at not being able to do up the buttons on his formal work shirts, Maura Horton came up with a simple and practical solution: magnetic buttons. Read about the four different areas of SMA management. According to a report on Fox News, Horton’s husband…
Many people who suffer from chronic illnesses also suffer from depression. Depression isn’t something that should be overlooked; it should be brought to your doctor’s attention so that it can be treated. But how do you spot depression? With help from prevention.com, we’ve put together a list of some of the most common physical signs…
A young boy in Morgantown, West Virginia is hoping to start the new FDA-approved treatment for spinal muscular atrophy (SMA). The two-year-old’s family was overjoyed when they found out the FDA had approved Spinraza and immediately sought to find out if they could start their son on the drug. RELATED:…
Zyah Goss-Pittman from Jefferson, Georgia, is a fun-loving, spunky seven-year-old who is proving doctors wrong whenever she can. Diagnosed at 15 months old with type II spinal muscular atrophy (SMA), Zyah has spent much of her life in and out of the hospital and has to have hours of treatments each…
