August is National SMA Awareness Month
Together in SMA Provides Resources
In an effort to increase knowledge and resources for Spinal Muscular Atrophy research and lead to better care for its patients, August is a time to educate those that might not know about SMA. Together in SMA, a group dedicated to funding research programs and supporting SMA families, has created a list of ways to connect in the community.
PHS Respiratory Therapist attends SMA Conference
From June 12-June 16, PHS Respiratory Therapist John Sheahan could be found at Disneyland in Anaheim, CA for the Families of SMA Annual Conference. This gathering of families, patients, researchers and health care providers is the largest in the world for those affected by SMA as well as for those involved in the care of SMA patients – making it a hub for support, advice, knowledge and advancement.
Researchers and providers gather to discuss the progress made and current research being done in the field in relation to treatments and cures, while families and patients gathered for their own workshops and conferences. Later, everyone had the opportunity to view poster presentations created by researchers, meaning each attendee was able to walk away with a better understanding of what is currently happening and what may be to come in the world of SMA treatments and cures.
But it wasn’t all work and research – word is there were powerchair races held and families stayed at the Disneyland hotel so they could visit the park in their spare time, making it an adventure as well.
At PHS, we work with families every day who have a child diagnosed with SMA. Through our experienced neonatal pediatric respiratory therapists, more kids can stay at home and out of the hospital. Check out Braylin’s story on page 9 of a previous issue of the Pulse to learn about how she lives at home with her mom and dad, enjoying music and the outdoors.
Originally published: August 13, 2013