Questions and answers about ALS and the upcoming National ALS Registry have been posted online
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
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
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
Air travelers 'hostile' as new required labels for respiratory equipment fail to materialize
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.
This article includes items about: Duchenne muscular dystrophy, myasthenia gravis, spinal muscular atrophy and acid maltase deficiency (Pompe disease)