The Gift of Self-Advocacy: Teaching Kids To Use Their Voice...From my personal experience living with SMA, I can attest to the incredible influence of parental support and encouragement in my life.... By Megan DeJarnett3 min readBookmark for laterReactions0reactionsComments0 comments
Valentine's Day and SMA...Throughout my life, I've never dated anyone, but I still hold onto the idea of romance and love.... By Jennifer Greer2 min readBookmark for laterReactions0reactionsComments3 comments
Applying for Disability Benefits...An SSA doctor will review your records to figure out how your condition limits your daily life and your ability to work.... By Editorial Team 3 min readBookmark for later
Patient Assistance Programs for SMA...Typically, to qualify you need to be a legal U.S. resident and meet some sort of income requirement.... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Just a Girl in the Men's Restroom...However that’s just not the reality. So I’m gonna take life as it comes and laugh when I can.... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments1 comments
My COVID Experience...My hope is to share my experience with you so that you can hear real-life stories of people who have had... By Megan DeJarnett3 min readBookmark for laterReactions0reactionsComments0 comments
SMA and COVID-19...Since late 2019, COVID-19 has become a household name. It has changed many aspects of daily life.... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
My Life as an Artist, Not SMA, Defines Me...For Ainaa Amaili, a patient leader for SpinalMuscularAtrophy.net, her life as an artist is one way she defines herself.... By Ainaa Farhanah4 min readBookmark for laterReactions0reactionsComments2 comments
Managing Healthcare Expenses...Some doctors give out free samples of brand-name drugs to help ease costs.... By Editorial Team 4 min readBookmark for later
Speech Therapy for Children with SMA...Many people with SMA can have difficulties with speech intelligibility, vocal intensity, and respiration to maintain voice quality.... By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments0 comments
My Journey to Becoming A Mom in a Wheelchair: Part 1...I never truly considered the reality of what that would look like for someone living with SMA.... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments0 comments
Regrets From a Father: Real Life Personal SMA Family Dynamics...He cut me out of his life totally. I guess to punish me, he has robbed me of any future... By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments0 comments
Jessie's Bucket List - What is on Yours?...Next, the second part of her bucket list was being planned. Jessie wanted to further her computer studies at a college level.... By Marc Mitnick3 min readBookmark for laterReactions0reactionsComments1 comments
Surround Yourself With the Right People...Each of us is trying to live life to the fullest, and these friends can push you to do just... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments0 comments
The Administrative Bent of People with SMA...I know many people spend a majority of their life fighting to make the world more accessible, and to illuminate some of the... By Megan DeJarnett2 min readBookmark for laterReactions0reactionsComments0 comments
The Importance of Improvisation...we begin learning early in life.... By Allie Williams3 min readBookmark for laterReactions0reactionsComments1 comments
The Importance of Stretching...When I started dating Suzanne, she really spent a lot of time helping me stretch. She is a certified yoga instructor.... By Mike Noon2 min readBookmark for laterReactions0reactionsComments0 comments
The Power of Research...I have lived my life in the hope of a cure someday. ... By Mike Noon2 min readBookmark for laterReactions0reactionsComments0 comments
The Advocacy Issues That Matter To Me...I'm grateful for my life but sometimes I'm tired of fighting, tired of being disabled, sometimes I just want to forget.... By Kellie Cusack3 min readBookmark for laterReactions0reactionsComments0 comments
Getting Wheelchair Accessible Concert Tickets...But the location of those seats and the quantity that’s available is sometimes incorrect due to venues changing their seating charts and not notifying... By Chaz Hayden2 min readBookmark for laterReactions0reactionsComments0 comments