Unlearning Ingrained AbleismI'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I...reactions1comment
Why Is Self-Care Important and How Can We Practice It?Self-care is one of those things we all know we should take care of, but neglect during stressful times. When managing daily...reactionscomments
Cold and Flu SeasonThe time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is...reactions1comment
Memories of the Labor Day TelethonI’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon. It was always an emotional...reactionscomments
Disability BenefitsConditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits...reactionscomments
Adjusting to Life’s TransitionsLife consists of transitions both large and small. One could argue that transitions are good and bad. I would argue that life...reactionscomments
What Is the Social Health Network?Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health...reactionscomments
Working on Mental ToughnessI wrote an article a while back, “Staying Mentally Healthy.” In that article, I attributed a lot of my mental toughness to...reactionscomments
The Decision to Change our Lifestyle for our DaughterJessie and her brother were born twins. It is important to realize that she was diagnosed with spinal muscular atrophy (SMA) at...reactionscomments
Telling Loved Ones About Your Child's SMA DiagnosisAfter getting news that your child has a serious illness like spinal muscular atrophy (SMA), you will likely turn to family and...reactionscomments
Wedding Dresses and WheelchairsSince I was a little girl I dreamt of the day that I would “walk” down the aisle on my big day...reactions1comment
A Village of Healthcare ProfessionalsWe quickly needed a village of professionals. Our daughter, Jessie, was born with spinal muscular atrophy (SMA) back in 1974. We quickly...reactionscomments
Finding Financial Assistance for TreatmentMany illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be...reactionscomments
My Good Days: A Resource for Financial HelpI’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically...reactions1comment
Navigating School Accommodations for Children With SMAThe United States government has many laws that protect rights to education for children with disabilities. Spinal muscular atrophy (SMA) is considered...reactions1comment
That Hospital Stay and One Nurse in the ICUIn 1974, my wife and myself were frightened when the Pediatric Neurologist diagnosed my daughter, Jessie, with spinal muscular atrophy (SMA) when...reactions3comments
Finding HalloweenThe festive side of the year is around the corner, and that always gets me excited! A key part of living with...reactions2comments
SMA In America: Results from Our 2022 SurveyIn our first ever Spinal Muscular Atrophy In America Survey, we collected information from 54 adults living with SMA and 8 caregivers...reactionscomments
Cooking Without HandsHave you ever had a desire to cook an amazing meal for someone but had a thought, “how would I do that?...reactions2comments
Breaking the SMA BarriersEveryone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want...reactions1comment
