Newborn Genetic Screening for Spinal Muscular Atrophy...Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. SMA is caused by a mistake in a specific gene. People with the faulty gene are not...Reactions0reactionsComments0 comments
My Life as an Artist, Not SMA, Defines Me...This year's theme for SMA Month was SMA does not define us. For Ainaa Amaili, a patient leader for SpinalMuscularAtrophy.net, her life as an artist is one way she defines...Reactions0reactionsComments3 comments
Caring For Our Daughter Born With Spinal Muscular Atrophy: One's Family Approach...We were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital as planned. So, my wife, my parents, and...Reactions0reactionsComments0 comments
My Spark is Music, Not SMA...This year's theme for SMA Month was SMA does not define us. For Allie Williams, a patient leader for SpinalMuscularAtrophy.net, her life as a musician is one way she defines...Reactions0reactionsComments1 comments
Gaming with a Disability...Recently I went on a search to find an accessible hobby that didn’t include technology or staring at a screen. I didn’t have much luck since technology is a key...Reactions0reactionsComments4 comments
You are more than someone with SMA. Who are you?...SMA is an all-consuming condition and affects so much of our lives. Other than SMA, how do you describe yourself? What is your passion? How have you adapted living with...Reactions0reactionsComments0 repliesAwareness
Jessie’s First Grade Class Learns About Disabilities...The back story: My daughter Jessie, had spinal muscular atrophy [SMA]. She was the first handicapped child to be mainstreamed in our local public school. In the 1970s, federal laws...Reactions0reactionsComments4 comments
FeaturedTeaching Children About Disabilities Discussion Board ...When you were a child, was it difficult to interact with non-disabled children? Did your school help introduce them to your disability? Was that helpful? Read an article about navigating...Reactions0reactionsComments4 repliesFriends & FamilyDisabilityEducation & Schooling
Extra Assistance at School...I was talking to a mom who has a teen with SMA. They were asking me for advice on what kind of accommodations they should be asking for in school. ...Reactions0reactionsComments1 comments
FeaturedDoctors won’t address my sma...So, I was reading my mri report and it says I have mild to moderate paraspinal musculature atrophy. You can clearly see atrophy in my right arm. After bringing it...Reactions0reactionsComments2 repliesTestingSymptomsHealthcare Team
A Moment That Changed Me...August is not just SMA awareness month, it is also a month when my sister passed away. 19 August 2013, a date that I will never forget. She was only...Reactions0reactionsComments5 comments
Tips for Travel...Whether it's for vacation, business, a chance to visit far-away relatives or friends, or to attend a special event like a friend's wedding, travel is part of life. For anyone...Reactions0reactionsComments0 comments
Grandparents Help Child with SMA Live Life...Zelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her mother crammed into my car, and off we...Reactions0reactionsComments0 comments
Shopping for Clothes with a Disability...One of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go to a store and quickly slip on a...Reactions0reactionsComments2 comments
Weight: Freshman 15 to the Covid 19...Today I’m talking about weight. At some point in our lives, most of us deal with weight gain. Back in college, the freshman 15 found me and during Covid weight gain...Reactions0reactionsComments0 comments
Helpful Government Programs...Depending where you live, your country or state may have different programs that you can access to help you manage disability caused by spinal muscular atrophy. We asked our patient...Reactions0reactionsComments0 comments
Government Programs...What government programs do you use to help you manage your SMA? Please share your state or country. Are you happy with the programs? What would you like to see?...Reactions0reactionsComments0 repliesDisabilityAwarenessCost
SMA Awareness Month Giveaway 2022...The SMA Awareness Month 2022 Giveaway is now closed. Thank you for your interest! August is Spinal Muscular Atrophy (SMA) Awareness Month. About 1 in 6,000 to 10,000 babies worldwide...Reactions0reactionsComments0 comments
SMA Awareness Month 2022...August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading to many lifestyle changes. Once a person is...Reactions0reactionsComments0 comments
SMA Awareness Month Discussion Board: What do you wish others knew about SMA?...If there was one thing you could tell the world about SMA, what would it be?...Reactions0reactionsComments6 repliesAwarenessMyths & Misconceptions
