Disability Benefits...When you have a chronic medical condition, there may be times when you are not able to work. This can seriously affect...
Workplace Considerations...Everyone deserves to be treated fairly at work, including people with chronic medical conditions or disabilities. It is not only the right...
Managing Healthcare Expenses...Managing a chronic health condition can take a financial toll on you and your family. Costs add up quickly from medicines, testing...
Playing the Evrysdi Long Game...Growing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy...reactions1comment
Becoming My Boyfriend’s Full Time SMA Caretaker ...I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by...reactionscomments
Accessible Bathrooms: Expressing my Concerns...Let’s talk about wheelchair-accessible bathrooms and stalls. I just had an “incident” recently at my local YMCA. I have been a member...reactionscomments
Running a Successful Business From Your Phone...Have you ever wondered, “Am I capable of being a business owner?” Living with SMA, we run into the constant challenges of...reactions1comment
Introduction to MDA and My Son's Diagnosis Journey...After waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist...reactions1comment
Losing My Best Friend...Today my household had to do something that owners of pets dread. We had to make the decision to end our dog’s pain...reactions1comment
My Thoughts on Treatment - Both Good and Bad...The term that has always been used in the SMA community prior to treatment was a cure. Fight for the Cure, Cure...reactions2comments
Hiring the Right PCA...I like to equate hiring a new caregiver to committing to a good relationship. It takes more time in the beginning, but...reactions1comment
Traveling with SMA...When it came to my level of independence, I have been pretty lucky. An area of my life that was always a...reactionscomments
Regrets From a Father: Real Life Personal SMA Family Dynamics...I have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor...reactionscomments
Managing Appointments for SMA...Spinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of...reactionscomments
Why Are You in a Wheelchair?...This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
Megan DeJarnett...Megan DeJarnett is a wife, mother of 2, children's book author, and disability advocate and influencer. She loves encouraging others that there's...
SMA Financial Frustrations...I stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers...reactions1comment
Finding the Right Healthcare Team...There are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
Things We Learned as Parents...Mike’s brother, Dan, was a competitive runner since fourth grade and he was Dan’s biggest fan and supporter. By high school, Mike...reactions1comment
Grips for a Wheelchair Joystick...Living with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that...reactions1comment
