Unlearning Ingrained Ableism...I'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...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 chores, work, school, family, and friends gets to...reactionscomments
FeaturedI'd Like To Thank My Caregiver For _______________...What would you say to your caregiver? What is something you're most grateful for when it comes to your relationship with them? Start and join the conversation below....reactions3repliesHealthcare Team
Cold and Flu Season...The 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...reactions1comment
Memories of the Labor Day Telethon...I’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...reactionscomments
FeaturedA Letter to Your Younger Self ...What's one thing you would tell your younger self with SMA? Comment below and start the discussion....reactionsreplies
Disability Benefits...Conditions 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...reactionscomments
Diet and Nutrition ...Hello everyone, I need advice. I'm really struggling to figure out food. I don't see any recipes I like online that are soft for me and/or healthy. I want to...reactions2replies
Adjusting to Life’s Transitions...Life 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...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. It also aims to expand opportunities for health...reactionscomments
Working on Mental Toughness...I 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...reactionscomments
The Decision to Change our Lifestyle for our Daughter...Jessie 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...reactionscomments
Telling Loved Ones About Your Child's SMA Diagnosis...After 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...reactionscomments
Wedding Dresses and Wheelchairs...Since 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...reactions1comment
Making Dreams A Reality...How has SMA affected your biggest, wildest dreams? Were you still able to make that dream a reality or did you have to adapt/change your expectations? Start the conversation here....reactionsrepliesCoping
A Village of Healthcare Professionals...We 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...reactionscomments
Finding Financial Assistance for Treatment...Many 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...reactionscomments
My Good Days: A Resource for Financial Help...I’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...reactions1comment
Resources for Assistance...What non-profit organizations have you found helpful? What services do they provide (financial, caregiving, other supportive services)?...reactionsrepliesCost
Navigating School Accommodations for Children With SMA...The 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...reactions1comment
