Helping My Daughter Make Choices and Experience LifeI realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet her needs. There were many choices in life... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
Voting With a Disability: What to KnowVoting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions. Until federal laws like the Americans with Disabilities... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments1 comments
Making the Best of ItI recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to an accident. Even though I have spinal muscular... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
My Reactions To Finding Out That My Daughter Had Spinal Muscular AtrophyMy experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared to her twin brother. Our pediatrician advised us... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
Computer Assistive TechnologySymptoms of spinal muscular atrophy (SMA) can make it hard to use technology. Computer assistive devices and strategies can improve access. They can help people with SMA communicate, maintain independence... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Erin Courteau3 min readBookmark for laterReactions 0 reactions Comments4 comments
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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments3 comments
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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Chaz Hayden7 min readBookmark for laterReactions 0 reactions Comments3 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Ainaa Farhanah4 min readBookmark for laterReactions 0 reactions Comments2 comments
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... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments1 comments
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... By Chaz Hayden3 min readBookmark for laterReactions 0 reactions Comments4 comments
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... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments4 comments
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. ... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
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... By Ainaa Farhanah3 min readBookmark for laterReactions 0 reactions Comments5 comments
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... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments