Remembering the First Days...As you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day and the birth of each of our children...Reactions0reactionsComments1 comments
Finding the Right Caregivers...Living with a disability, I like to consider a full-contact sport. It requires your mind, body, and soul to be as healthy as possible. And in most cases, it requires...Reactions0reactionsComments0 comments
"When I’m an Adult, I Will Walk"...Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This was all within 5 minutes of pulling into...Reactions0reactionsComments4 comments
SMA Awareness or Pride?...Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did not know about SMA Awareness/Pride month until this...Reactions0reactionsComments4 comments
Adapting and Fitting In...We all want to fit in. What does that look like? Who do we want to be? I believe that everyone deals with this feeling of being left out at...Reactions0reactionsComments2 comments
Erin Courteau...Erin was previously a health leader on SpinalMuscularAtrophy.net. Erin Courteau is mother to a 4-year-old with type-1 spinal muscular atrophy. Her daughter was diagnosed in October 2017 when she was...
Lewis Beatty...Lewis was previously a patient leader on SpinalMuscularAtrophy.net. Greetings SMA community! My name is Lewis, a weak type II with SMA. I live in New Jersey in the US. Yes...
Spinal Muscular Atrophy: Self-Care Tips for Caregivers...Spinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of SMA depend on which type a person has...Reactions0reactionsComments1 comments
My Life with SMA...It all started here Mom was wondering why a bubbly little girl who can already speak at 10 months old cannot crawl but managed to sit. She skipped a few...Reactions0reactionsComments1 comments
Marc Mitnick...Marc Mitnick is a certified Speech Pathologist and patient advocate. He graduated from NovaSoutheastern University, Ft. Lauderdale, FL, with a Master's Degree in Speech Pathology and specializes in Neurogenic and...
Allie Williams...Allie Williams is a 44-year-old woman with spinal muscular atrophy type 2. She was diagnosed at age 18 months, and her parents were told a short life was predicted. Never...
Why I Love and Hate My G-Tube...“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have no idea what I’m talking about or referring...Reactions0reactionsComments0 comments
Ainaa Farhanah...is a very active young artist from Malaysia. Her passion for arts since childhood is depicted in all her designs and paintings. Ainaa’s childhood is ingrained with arts thanks to...
Maryalice Noon...Maryalice was previously a health leader on SpinalMuscularAtrophy.net. Maryalice and her husband Dennis raised 3 children: Mike, Dan, and Ali. Their oldest child Mike was originally diagnosed around the age...
Talking to an Employer About SMA...Talking to an employer about spinal muscular atrophy (SMA) can be scary. But many people find that open communication with their employer improves their work life. For example, your employer...Reactions0reactionsComments0 comments
Suzanne Cutler...Suzanne lives in the suburbs of Philadelphia, PA. She graduated from Tulane University with a degree in History. She has a 9 year old daughter, Ava. In August of 2015...
The Journey Begins...I am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved one diagnosed with a disease, it affects the...Reactions0reactionsComments0 comments
Coping With Your Child’s SMA Diagnosis...A child’s diagnosis of spinal muscular atrophy (SMA) can be a life-changing event for parents. Parents say they feel a range of emotions while waiting for a diagnosis and after...Reactions0reactionsComments1 comments
Chaz Hayden...Chaz was previously a health leader on SpinalMuscularAtrophy.net. Chaz Hayden grew up in New Jersey and was diagnosed with spinal muscular atrophy when he was three months old. Doctors told...
Home Accessibility...Families of children with spinal muscular atrophy (SMA) often choose to modify their home. These changes can help meet children’s specific needs by improving safety, accessibility, and independence. Home modifications...
