Why am I Always the Party Pooper?I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and GI issues. With the diagnosis came orders of... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
Celebrating the Holidays and Special OccasionsWe asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted to make special occasions easier? What is the... By Editorial Team5 min readBookmark for laterReactions 0 reactions Comments0 comments
Hope for the New YearIt’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new year for themselves and others living with spinal... By Editorial Team4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 rights under these laws.1,2 The Americans with Disabilities... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 didn't know anyone who was disabled personally until... By Samantha Lackey1 min readBookmark for laterReactions 0 reactions Comments0 comments
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 chores, work, school, family, and friends gets to... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 among us. I know that most parents do... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 experience for me. My senior year of high... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Disability BenefitsConditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits from the US Social Security Administration (SSA) can... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 would be extremely boring if we never had... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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. It also aims to expand opportunities for health... By Editorial Team4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 my circumstances. Most importantly growing up in a... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 six months of age. My son did not... By Marc Mitnick2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 friends for support. Here are some things to... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
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. I didn’t think about the logistics as a... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 realized that we needed to plan for a... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 challenging. Insurance plans cover some expenses. But out-of-pocket... By Editorial Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 refers to the extra expenses that are incurred... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 an orthopedic impairment under these laws. This means... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments1 comments
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 she was less than a year old. During... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments3 comments