This is Her SpaceAdvocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work...reactions4comments
The Art of Chewing and Swallowing with SMAIf you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However, one area I was never prepped for weakening...reactions3comments
Being a Parent of a Child with SMAI have talked about this a few times already. I have also read other parents' points of view on this site. I can say with certainty that we all come...reactionscomments
About You: An Author and a Character with SMANote: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his life as a writer is one way he...reactions3comments
Modifying Your Home for More IndependenceSpinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. People with SMA may have problems with doing daily activities, movement, and speech.1 Having an accessible home...reactionscomments
Newborn Genetic Screening for Spinal Muscular AtrophySpinal 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...reactionscomments
My Life as an Artist, Not SMA, Defines MeThis 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...reactions3comments
Caring For Our Daughter Born With Spinal Muscular Atrophy: One's Family ApproachWe 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...reactionscomments
My Spark is Music, Not SMAThis 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...reactions1comment
Gaming with a DisabilityRecently 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...reactions4comments
Jessie’s First Grade Class Learns About DisabilitiesThe 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...reactions4comments
Extra Assistance at SchoolI 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. ...reactions1comment
A Moment That Changed MeAugust 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...reactions5comments
Tips for TravelWhether 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...reactionscomments
Grandparents Help Child with SMA Live LifeZelda'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...reactionscomments
Shopping for Clothes with a DisabilityOne 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...reactions2comments
Weight: Freshman 15 to the Covid 19Today 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...reactionscomments
Helpful Government ProgramsDepending 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...reactionscomments
SMA Awareness Month Giveaway 2022The 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...reactionscomments
SMA Awareness Month 2022August 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...reactionscomments
