Valerie Cwik

posted on October 1, 2012 - 9:00am
Whether it’s funding research, or providing services and health care, MDA is keenly focused on improving the lives of those we serve. That’s why I’m really excited about our latest program: the MDA Neuromuscular Disease Registry. The registry, which will be launched in a number of MDA clinics by the end of this year, is a powerful tool for improving care, and ultimately, length and quality of...

Questions and answers about ALS and the upcoming National ALS Registry have been posted online

posted on October 10, 2009 - 10:33am
The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at www.cdc.gov/als.    

New guidelines for physicians caring for ALS patients released by the American Academy of Neurology

posted on October 7, 2009 - 9:00pm
 The American Academy of Neurology (AAN) released its new guidelines on patient care in amyotrophic lateral sclerosis (ALS) on Oct. 13, 2009. Several MDA-affiliated physicians were involved in their development.

New survey shows average of 2.5 years elapse between symptom onset and diagnosis of DMD

posted on September 7, 2009 - 9:00pm
A study that analyzed medical records from four U.S. states has found that the average time between symptom onset and diagnosis of Duchenne muscular dystrophy (DMD) is 2.5 years, an interval that hasn't changed in two decades. This delay in identification postpones treatment that can slow the progression of the disease and results in lost opportunities for genetic counseling of parents.

MDA delivers ‘a piece of camp’ after summer camp cancellations

posted on August 12, 2009 - 9:00pm

Air travelers 'hostile' as new required labels for respiratory equipment fail to materialize

posted on July 15, 2009 - 5:27pm
Vent, CPAP and BiPAP users can expect to encounter ongoing obstacles if they plan to fly on commercial airlines in the near future. Interviews with government and industry representatives show that the special labeling required for such equipment still has not been created, and no one – except the frustrated and angry travelers affected by the ruling – seems to consider it an urgent matter. The...
posted on March 1, 2008 - 10:21am
QUEST Vol. 15, No. 2
This article includes items about: Duchenne muscular dystrophy, myasthenia gravis, spinal muscular atrophy and acid maltase deficiency (Pompe disease)