News

August 20, 2018August 20, 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 (SMA) type 1 feel during Spinraza administration through spinal taps, ... Read more

August 16, 2018August 20, 2018

SMA Groups Outraged Over UK Rejection of Spinraza Coverage as Too Expensive

News

Devastating. Heartbreaking. A death sentence for an estimated 1,000 children with spinal muscular atrophy (SMA). These are among the many angry reactions to Tuesday’s appraisal consultation document issued by ... Read more

August 14, 2018August 17, 2018

NICE Opposes Adding Spinraza to UK Public Health System; SMA Groups Object

News

The National Institute for Health and Care Excellence (NICE), the U.K. agency that decides on the cost-effectiveness of therapies for inclusion in the public health system of England and Wales, is ... Read more

August 10, 2018August 14, 2018

From Candle Lightings to Baseball Games, August Marks SMA Awareness Month

News

At sunset on the second Saturday of every August, it’s a tradition to light candles in memory of those who have died of spinal muscular atrophy — and to ... Read more

August 8, 2018August 10, 2018

ICER to Compare Clinical Efficacy and Value of Spinraza and AVXS-101 in Treating SMA

News

The Institute for Clinical and Economic Review (ICER) will compare the clinical effectiveness and value of the only approved disease-modifying treatment for spinal muscular atrophy (SMA) — Spinraza (nusinersen, ... Read more

August 6, 2018August 8, 2018

Mizzou Researchers Launch Shift Pharmaceuticals to Test Potential SMA Therapy

News

Researchers at Mizzou — the University of Missouri — have started a new company, Shift Pharmaceuticals, to test the clinical effectiveness of a molecule that may help improve the ... Read more

August 3, 2018August 10, 2018

New Mutation Linked to SMA-LED in 4 Unrelated Children, Case Study Reports

News

A newly identified mutation in the DYNC1H1 gene causes a rare form of spinal muscular atrophy known as SMA with lower limb predominance, which is associated with learning difficulties and brain ... Read more

August 1, 2018August 10, 2018

Physical and Emotional Factors Weigh on SMA Patients’ Likelihood to Engage in Activities, Study Says

News

Degree of motor skills, and the intensity of feelings of depression and fatigue influence the degree to which adults with spinal muscular atrophy (SMA), regardless of subtype, participate in and ... Read more

July 30, 2018August 10, 2018

Mix of Muscle Vibration and Intensive Rehab Seen to Increase Muscle Strength in SMA Type 2 and 3 in German Study

News

A physiotherapy program that alternates whole-body vibration with intensive rehabilitation shows potential to improve motor function and mobility scores in children with SMA type 2 and 3, a study ... Read more

July 27, 2018August 10, 2018

$300,000 Cure SMA Grant Awarded for Preclinical Study of Potential Therapy LDN-5178

News

Spotlight Innovation announced that the nonprofit Cure SMA has awarded $300,000 to Prof. Kevin Hodgetts, of Brigham and Women’s Hospital in Boston and a Spotlight research collaborator, for the ... Read more

Pin It on Pinterest