Personal HeroesWe asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with...reactionscomments
Weight Management and Spinal Muscular Atrophy - Take Our Quick PollsFor people living with chronic health conditions, managing weight can be a particularly challenging task. Balancing the demands of managing symptoms and...reactionscomments
Rare Disease DayThe last day of February is Rare Disease Day! To celebrate and acknowledge this important day in the rare disease community, we...reactionscomments
How Do You Handle Cold Weather?We asked our Patient Leaders here at SpinalMuscularAtrophy.net, "How do you handle colder weather?" Does cold weather impact their SMA symptoms? Do...reactionscomments
An Overview of Disability Rights LawsThe US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain...reactionscomments
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
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
Grandparents Help Child with SMA Live LifeZelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her...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
How Clothes Made the Difference to My DaughterMy daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent...reactions2comments
Being a Parent of a Child with SMAI have talked about this a few times already. I have also read other parents' points of view on this site. I...reactionscomments
Personal Care AssistantsMany people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal...reactionscomments
Where Does This Leave Siblings?That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is...reactions1comment
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
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
