Hope for the New Year...It’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new...reactionscomments
A Question For The Community: Comfortable Bed Cushions ..."My wife has SMA and we are spending a fortune trying to find the right cushion for her to be able to...reactions3repliesTips & AdviceAssistive Equipment
A Challenge I've Recently Overcome Is ______________...Fill in the blank. What is a challenge you've recently overcome while living with SMA? How would you encourage others who are...reactionsrepliesTips & Advice
Resources for Veterans, LGBTQ+ People, and Other Special Groups...Coping with a chronic health condition can be challenging for you, your family, and your caregivers. You rely on your healthcare team...
A Misconception I've Faced Living with SMA Is __________...What misconceptions have people expressed to you about living with SMA? How did you approach them / prove them wrong? Join the...reactionsrepliesTips & AdviceMyths & Misconceptions
An Overview of Disability Rights Laws...The US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain...reactionscomments
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...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
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?...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...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...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...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...reactions3replies
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...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 Toughness...I 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 Daughter...Jessie 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 Diagnosis...After 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 Wheelchairs...Since I was a little girl I dreamt of the day that I would “walk” down the aisle on my big day...reactions1comment
