The Joy of the MDA Summer CampI think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week at a summer camp for kids with a... By Maryalice NoonBookmark for later Reactions 0 reactions Comments0 comments
Day in the Life Without Your PCAI am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are pros and cons to using a PCA in... By Megan DeJarnettBookmark for later Reactions 0 reactions Comments0 comments
Essential Items to Manage SMALiving with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out what they always... By Editorial TeamBookmark for later Reactions 0 reactions Comments0 comments
Staying Mentally HealthyI’m in my mid 40’s and I find it encouraging that mental health has become more out in the open. I know living with spinal muscular atrophy has probably made... By Mike NoonBookmark for later Reactions 0 reactions Comments0 comments
Dealing with Changes in SMASpinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA are very different, I have always found that... By Michaela HollywoodBookmark for later Reactions 0 reactions Comments0 comments
Mental Health with SMA – A Cellphone AnalogyThe best way I can describe living with a chronic disease like SMA is that I am a cellphone and my disease is all of the open windows in the... By Samantha PrzybylskiBookmark for later Reactions 0 reactions Comments2 comments
Successful Intubation and AnesthesiaEvery two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in the main operating room in the hospital so... By Chaz HaydenBookmark for later Reactions 0 reactions Comments0 comments
Best Date Ideas for Interabled CouplesI’m a firm believer that dating your spouse is equally as important when you’re 5 or 10 years into marriage than it was when we were in those first months... By Megan DeJarnettBookmark for later Reactions 0 reactions Comments0 comments
Advice for Younger People with SMAWe asked our team of advocates: What advice do you have for younger people with SMA?Allie: Learn how to adapt what you enjoy doing to your specific needs. If you... By Editorial TeamBookmark for later Reactions 0 reactions Comments0 comments
Speech Therapy for Children with SMAI am a speech pathologist. My daughter had spinal muscular atrophy. One of my daughter’s needs was speech therapy services. Since I was too close to this situation, I chose... By Marc MitnickBookmark for later Reactions 0 reactions Comments0 comments
What is Your Definition of Independence?Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my body can do. I think what we lack... By Mike NoonBookmark for later Reactions 0 reactions Comments0 comments
Early Education ObstaclesGrowing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced as a student were physical like being able... By Chaz HaydenBookmark for later Reactions 0 reactions Comments0 comments
Surround Yourself With the Right PeopleHaving the right people around you in life is so vital. Especially in a world where so much is said online, and people can hide behind computers to share opinions... By Megan DeJarnettBookmark for later Reactions 0 reactions Comments0 comments
Qualities of a Good SMA SpecialistWhen it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the personality a good fit? Is this person up... By Editorial TeamBookmark for later Reactions 0 reactions Comments0 comments
Patronizing CommentsI was recently on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment that drove me nuts. She said she... By Mike NoonBookmark for later Reactions 0 reactions Comments0 comments
SMA Treatment AdvancementsWe asked our team of advocates: What have advancements in treatment for spinal muscular atrophy meant to you?Allie: The celebration of life. I have watched my disease take away so... By Editorial TeamBookmark for later Reactions 0 reactions Comments0 comments
Navigating Early Intervention and EducationOur daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our daughter would need early intervention training, including therapy... By Marc MitnickBookmark for later Reactions 0 reactions Comments0 comments
Challenges with SMA TreatmentsWe asked our team of advocates: What challenges have you faced around SMA treatment options?Allie: Due to how the approval of the medication process goes with the trials, which often... By Editorial TeamBookmark for later Reactions 0 reactions Comments0 comments
When Your Equipment BreaksMy worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine... By Chaz HaydenBookmark for later Reactions 0 reactions Comments0 comments
Take the Health and Media Habits Survey!The Media Habits Survey is now closed. Thank you for your interest! Managing a chronic condition is not easy and can be physically and mentally exhausting. What types of media... By Editorial TeamBookmark for later Reactions 0 reactions Comments0 comments
