Welcomed Support for Caregivers...What kind of support do you find useful as the caregiver of someone with SMA? Who gives you that support and how do you ask for it?...Reactions0reactionsComments0 repliesCaregivingFriends & Family
Large Medical Team Helps a Child With SMA...When our daughter, Jessie was born we were overjoyed. We were unaware of what was in store for my daughter and our family. Jessie was not meeting her age-related milestones...Reactions0reactionsComments0 comments
Living With SMA as a Mom...I am 35 years old. I'm a mum of 3, all by C sections. I have had SMA since I was born. I don't have a specific type it's just...Reactions0reactionsComments5 comments
Sma led dync1h1 mutation ...Hello, I have several dync1h1 mutations and i am looking for expert who can confirm if they are pathogenic (report says acmg likely pathogenic) Thanks...Reactions0reactionsComments1 replies
Some tips for using and purchasing assistive equipment are ___________....Fill in the blank! What is your experience with purchasing assistive equipment? Do you have any fears about using them? Are there certain wheelchairs or assistive tools that have helped...Reactions0reactionsComments4 repliesAssistive EquipmentTips & Advice
My First Wheelchair Seating Clinic...In previous articles, I’ve written about perception. How we are perceived is a big part of ourselves. When I went off to college, I knew that I wouldn’t be able...Reactions0reactionsComments0 comments
Becoming Financially Independent...The other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job. I wanted to make sure that I would...Reactions0reactionsComments2 comments
Your Heroes...Tell us about the person who has helped you the most as you've navigated living with SMA. Who has been your hero?...Reactions0reactionsComments0 repliesCaregivingFriends & FamilyHealthcare Team
Wheelchair Recommendation and Favorite Features...As someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial commitment but is a piece of our body...Reactions0reactionsComments1 comments
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 SMA. Here are their responses: Michaela: My sister...Reactions0reactionsComments0 comments
Body Image...What concerns do you have about your body image or perception? Is your perception accurate or do you have an image of yourself from a younger time? How does disability...Reactions0reactionsComments0 repliesAwareness
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 in 2017 I was lucky to be invited...Reactions0reactionsComments1 comments
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 condition with spinal muscular atrophy. When it’s cold...Reactions0reactionsComments0 comments
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 born with spinal muscular atrophy type 1. Elijah...
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 joy. She's trapped in a body that won't...Reactions0reactionsComments1 comments
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 disability like spinal muscular atrophy. These dating apps...Reactions0reactionsComments1 comments
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 week, his diagnosis of a very rare form...Reactions0reactionsComments1 comments
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 “empty nesters”. This is met with different emotions. ...Reactions0reactionsComments0 comments
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 medical equipment and I shouldn’t want for more...Reactions0reactionsComments1 comments
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 had a bucket list also. When she was...Reactions0reactionsComments1 comments
