Taking Care of a Child With SMA...You may spend a lot of time searching for doctors or figuring out what your insurance covers.... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Side Effects from Stopping Evrysdi...On top of that, I was getting really bad headaches that almost felt like a concussion.... By Chaz Hayden2 min readBookmark for laterReactions0reactionsComments1 comments
Gaming with a Disability...Obviously, those are things that aren’t possible for me to do in reality.... By Chaz Hayden3 min readBookmark for laterReactions0reactionsComments4 comments
Top Tips for Hiring a PCA...It is crucial to remember that this person will be involved in the most personal, intimate aspects of your life.... By Megan DeJarnett4 min readBookmark for laterReactions0reactionsComments0 comments
ABLE Accounts...The Stephan Beck Jr. Achieving a Better Life Experience (ABLE) Act of 2014 created ABLE accounts.... By Editorial Team 3 min readBookmark for later
Life Expectancy and Prognosis for SMA...Other rare forms of SMA vary in life expectancy and prognosis.... By Editorial Team 3 min readBookmark for later
A Village of Healthcare Professionals...I am sure that you can add to my list of other people that can be helpful to your child’s care... By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments0 comments
The Frustrations of Broken Equipment...I live outside of Philadelphia. The closest wheelchair van mechanic is about 45 minutes away. ... By Mike Noon2 min readBookmark for laterReactions0reactionsComments0 comments
Letting Go of a PCA...These caring people are typically in our life every day, helping us with some of the most private things from washing us to... By Megan DeJarnett3 min readBookmark for laterReactions0reactionsComments0 comments
Define Love...Of course, there are other things. But you have to accept it. Not all things will go your way. Life must go... By Ainaa Farhanah3 min readBookmark for laterReactions0reactionsComments0 comments
Making the Best of It...I believe the answer is truly that i am trying to make the best of my life.... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments1 comments
The Frustration of "Inaccessible" Accessibility...When this happens, it makes it extremely hard for those of us in wheelchairs to navigate the world since we have limited... By Allie Williams3 min readBookmark for laterReactions0reactionsComments2 comments
Comparing Developmental Milestones of Twins...My late wife Zelda was pregnant in 1974! This was our first pregnancy! Zelda was under the care of her obstetrician. ... By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments1 comments
Navigating School Accommodations for Children With SMA...This is something you will have to do at the start of each school year.... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments1 comments
I Was a Guinea Pig...In addition to participating in clinical trials and consistently providing blood for research purposes, my young life with spinal muscular atrophy (SMA... By Allie Williams3 min readBookmark for laterReactions0reactionsComments1 comments
Things I Wish People Knew...It’s not a complaint, mind you; it’s simply a part of my life.... By Jennifer Greer4 min readBookmark for laterReactions0reactionsComments2 comments
The Decision to Change our Lifestyle for our Daughter...They wanted to be there for my children and give of themselves in any way that they could, to make life... By Marc Mitnick2 min readBookmark for laterReactions0reactionsComments0 comments
Having Able-Bodied Siblings As Someone With SMA...It made me realize it’s okay to have different paths in life as long as you can still meet somewhere in... By Jennifer Greer3 min readBookmark for laterReactions0reactionsComments0 comments
My Reactions To Finding Out That My Daughter Had Spinal Muscular Atrophy...I started to feel my sense of hopelessness about the future loss of not having my child live a long By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments0 comments
Using Your Disability to Impact Lives...While public speaking isn't everyone's cup of tea, if you find joy in sharing the nuances of your life, I can begin... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments1 comments