Personal Heroes...We asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with...reactionscomments
Body Image...What concerns do you have about your body image or perception? Is your perception accurate or do you have an image of...reactionsrepliesAwareness
Body Perception...One of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back...reactions1comment
Escaping the Cold Winters...Mike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his...reactionscomments
Elizabeth De La Cruz-Noland...Elizabeth was previously a health leader on SpinalMuscularAtrophy.net. Elizabeth De La Cruz-Noland is a mom of two. Her second child, Elijah, was...
If You Fall, I’m Going Down With You...My sweet child, she’s fearless. She’s put me at max speed. She’s "Daddy look at me!" She’s full of constant laughter and...reactions1comment
5 Tips for Dating with a Disability...The dating landscape with social media and dating apps is not always an ideal way to meet others when you have a...reactions1comment
Son With SMA BICD2 Gene Mutation...My son was born with dislocated hips and deformed feet, its been a long road of appointments, tests etc. for diagnosis. This...reactions2comments
Empty Nest Again...As any typical parent will experience the day when your last child leaves the childhood home. At this point we are called...reactionscomments
Disability Costs Too Much...I often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable...reactions1comment
Jessie's Bucket List - What is on Yours?...Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie...reactions1comment
FeaturedTreatment Journey Update...Where are you on your treatment journey? Have you begun treatment or are you weighing your options? Do you have experience switching...reactions7repliesTreatment
Letting Go of a PCA...Like any other job in this world, being someone’s personal care assistant just isn’t for everyone. But unlike every other job, this...reactions4comments
5 Disability Tips for Attending Large Venue Events...Who doesn't like going to a concert, performance, or sporting event? The problem is, it's not always easy to attend events at...reactionscomments
Kellie Cusack...Kellie was previously a health leader on SpinalMuscularAtrophy.net. Kellie Cusack is a 23-year-old woman (pronouns: she/they) from New Jersey. She enjoys music...
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
Will you take our 2023 In America survey and help others understand the true impact of SMA?...To better understand the patient experience and realities of SMA, we are fielding our 2023 SMA In America survey. By taking this...reactionsrepliesAwareness
The Weight of Guilt: My Struggle With SMA and its Impact on Caregivers...I’ve talked about the guilt I deal with in regards to the amount of work people need to exert in order to...reactions3comments
Needing My Husband's Help in a Public Restroom...I can honestly say some of my funnier moments coping with spinal muscular atrophy have come from having to use public restrooms...reactions1comment
Making Sacrifices or Accommodating Each Other...Relationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate...reactionscomments
