parents

February 19, 2019February 25, 2019

Dear Parents: Let Your Kid with SMA Dream Big

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

To any parent who has a child with SMA: Recently, I had a conversation with my caregiver Randy about our goals for the future. We talked about career goals, ... Read more

February 8, 2019February 12, 2019

On Hiring New Caregivers

Columns, Life, One Cup at a Time - a Column by Alyssa Silva

Recently, one of our columnists, Kevin Schaefer, took to the SMA forums to discuss his experiences with hiring new caregivers. His portrayal of what these experiences entail certainly resonated ... Read more

August 20, 2018September 10, 2018

Psychological Support Relieves Anxiety of Spinraza Treatment in Kids with SMA Type 1, Study Says

News

Psychological interventions to control emotional stress can help relieve the anxiety that parents and children with spinal muscular atrophy type 1 feel during Spinraza administration through spinal taps, an ... Read more

April 18, 2018April 17, 2018

A Message for Us

Columns, Five Servings of Strength- a column by Michael Casten

An envelope covered in hearts and addressed to “Mom and Dad.” This envelope was kept secret for days, but there were hints that it was coming. Ella worked on ... Read more

October 20, 2017October 19, 2017

Why I’m Grateful for Another Year

Columns, Life, One Cup at a Time - a Column by Alyssa Silva

Birthdays take on a slightly different meaning around here. At this time every year, I think about a story my mother once told me about the first birthday I ... Read more

July 18, 2017July 18, 2017

Lack of SMA Type 1 Knowledge Among Doctors, Nurses Stresses Out Parents, Study Finds

News

A lack of familiarity with spinal muscular atrophy (SMA) type 1 among primary health care staff often makes caring for infants with the disease a stressful experience for families, ... Read more

Pin It on Pinterest