The 2024 Social Health Awards ProgramWe are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards program recognizing Health Leaders who make a difference... By Editorial Team 1 min readBookmark for laterReactions 0 reactions Comments0 comments
Making Forever FriendsMaking friends was never difficult for me as a young girl or even as a teenager. I have always been a pretty outgoing person. I was always extremely sociable, loved... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
How Clothes Made the Difference to My DaughterMy daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent area. All her classmates were able-bodied. Her fellow... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments2 comments
Side Effects from Stopping EvrysdiRecently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few reasons, the primary being insurance battles and their... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments1 comments
What Is an Accessible Home? I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100% accessible to meet my needs. The trick is... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
For Parents: Advice on Talking to Young Children About SMAIt can be challenging as a parent to tackle difficult conversations with children and young adults about spinal muscular atrophy or disabilities. We reached out to our team of advocates... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
The FundraiserI wanted to give some insight about being receptive to the charity of well-meaning people. My coworkers were always supportive in listening to all my fears and concerns, in particular... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Transitioning To Adulthood with SMAI was raised by two amazing parents who truly fought for the best for their children, both disabled and not. Like I think most parents do, my parents did everything... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Pregnancy That Couldn't BeContent Note:This article describes the author's personal experience with pregnancy loss. I was 2 weeks late... I was never late. My heart soared... I was elated when I took the... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments1 comments
That One Time in VegasNot everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to a suite, free admission to the casino pool... By Chaz Hayden4 min readBookmark for laterReactions 0 reactions Comments0 comments
Parents Living With a Ticking Time BombLiving within the dash, 1974-1991. My wife and I lived 'within the dash,' holding a ticking time bomb. During this time my daughter lived her life battling spinal muscular atrophy... By Marc Mitnick4 min readBookmark for laterReactions 0 reactions Comments0 comments
The Awkward GreetingA few weeks ago Suzanne and I went out to dinner with friends of ours to a new restaurant. We arrived first and were seated. While looking over the menu... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips and Tricks for Day TripsMy friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many other wheelchair users with spinal muscular atrophy, backpacks... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
A Parent's JourneyAs a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From that moment on, we immersed ourselves in planning... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
The Odd Mom OutI had SMA type 2 and became a mother at the age of 25. I then became a mother for a second time only 20 months later. Parenting can be... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips for Finding Healthcare ProvidersIt can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can trust is really important to feel in control... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments1 comments
I Stopped Taking EvrysdiWhen SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I never tried due to other medical issues and... By Chaz Hayden3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Frustrations of Broken EquipmentWhen living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is wonderful until it breaks. I don’t know about... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 Noon2 min readBookmark for laterReactions 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 DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments