Finding Financial Assistance for Treatment...Many illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be...reactionscomments
My Good Days: A Resource for Financial Help...I’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically...reactions1comment
That Hospital Stay and One Nurse in the ICU...In 1974, my wife and myself were frightened when the Pediatric Neurologist diagnosed my daughter, Jessie, with spinal muscular atrophy (SMA) when...reactions3comments
Finding Halloween...The festive side of the year is around the corner, and that always gets me excited! A key part of living with...reactions2comments
SMA In America: Results from Our 2022 Survey...In our first ever Spinal Muscular Atrophy In America Survey, we collected information from 54 adults living with SMA and 8 caregivers...reactionscomments
Breaking the SMA Barriers...Everyone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want...reactions1comment
Voting With a Disability: What to Know...Voting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions...reactions1comment
Making the Best of It...I recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to...reactions1comment
This is Her Space...Advocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient...reactions4comments
Living With SMA Type 2 at 49...You'd think, "OMGosh she’s bedridden or should be." I have been on my own since I was 28 and have had to...reactions5comments
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...reactionscomments
About You: An Author and a Character with SMA...Note: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his...reactions3comments
Emotional Effects of a Spinal Fusion...I know many things have advanced in the medical field especially when it comes to spinal fusions. I had mine done at...reactionscomments
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...reactions1comment
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...reactions3comments
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...reactions5comments
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...reactionscomments
SMA and COVID-19...Since late 2019, COVID-19 has become a household name. It has changed many aspects of daily life. Especially for those living with...reactionscomments
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...reactionscomments
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...reactionscomments
