An Accessible Cruise Vacation...I just went on a birthday cruise on the Disney Wish with my mama! I wanted to share about accessibility and what helped the most to make the cruise the...reactions3comments
May is Mental Health Awareness Month!...It's ok to not be ok. It's valid to feel all the highs and lows that life hands you, especially when living with a rare disease. How has your mental...reactionsrepliesMental Health
Fears of the BiPAP...Living with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been significant advancements in pulmonology for this rare condition...reactions1comment
Mental Health Awareness Month...May was designated National Mental Health Awareness Month in 1949 by the United States Congress due to the increased number of veterans suffering from mental illnesses after returning from World...reactionscomments
Preventing Pressure Injuries for wheelchair bound...Hi SMA community, I am a caregiver for my 70yr old father diagnosed with SMA 3. He is currently receiving Spinraza. Our biggest challenge in keeping him healthy is preventing...reactions4replies
The Promise of Treatment...Our family journey began when Mike was five years old. After a barrage of testing and doctor appointments, we were given the diagnosis of Muscular Dystrophy. The name of just...reactionscomments
Keeping Positive During Life’s Transitions...Our lives will be constantly changing. This is true for everyone. Whether you are disabled or not. Life never stays stagnant so how can we adapt and stay positive? Staying...reactionscomments
Cure SMA Conference Tips...I went to the Cure SMA Conference for the first time when I was 10 with my mom, dad, and grandparents (my mom's parents). To be honest, I was in...reactions1comment
The Mom In The Wheelchair...Recently, I had an experience I didn’t know I desperately needed. I went to volunteer in my daughter’s kindergarten classroom. I was nervous because I did not want my wheelchair...reactions1comment
Maintaining Relationships with Family and Friends...Caretaking for a loved one is a full-time gig. I purposely used the word gig instead of job. I really love what I do. I get paid to be with Mike...reactions1comment
A Family Affair...I have been writing about my spinal muscular atrophy journey for a few years now. I often wonder who out there is reading these articles. Obviously it can be intimidating...reactions2comments
We Flow with the Changes in Our Child...Yes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again into that teenager. Finally into that young adult...reactionscomments
Self pleasure tips...Hello. Please delete if this isn't appropriate, but I was just curious what y'all do to help yourself when you're in the mood?...reactionsrepliesIntimacy & Relationships
Disability Does Not Make You Immune to Hardship...Recently, I have had a huge life transition and not a positive one. I feel society often thinks that disabled individuals do not go through hardship. That we don’t have...reactions1comment
“I Have Chosen To Live With It Rather Than Just Survive”...Hello My name is Rafael Garcia, and I want to share with you a little bit about myself. I am a 27-year-old writer, and I have been living with a...reactions3comments
Caring For A Loved One...Being paid to take care of someone is a thought that never crossed my mind. Growing up in a large family and being the oldest of 5 kind of made...reactionscomments
Where I Got Stuck, and Other Stories...We asked our Patient Leaders if they have any stories (humorous or otherwise) that only someone else with SMA or a disability would understand. Here are their responses: Michaela: One...reactionscomments
FeaturedCommon Myths & Misconceptions You've Faced...What are some common myths & misconceptions you've faced living with SMA?...reactions5repliesMyths & Misconceptions
Boredom Busters...I can't tell you how many times I've Googled "Things to do in the winter when bored," or "Boredom busters" just to be met with able-bodied people telling me to...reactions5comments
Red October...Any sports fan in the Philadelphia area will understand the phrase Red October. For those of you who are not lucky enough to live here and understand the phrase let...reactionscomments