Here is what I understand about Genetic Testing.

It’s important to understand that ALS is not just a single disease, but a collection of many different diseases that share the name — Amyotrophic Lateral Sclerosis(ALS) or Motor Neurone Disease(MND). At this time, there are more than 30 different genes that can fail or mis-fold that cause ALS to occur. Some people with ALS can’t speak but can eat. Others can speak but eating is difficult. Some can use their hands and arms but can’t walk. The myriad of symptom combinations is endless. There are more than 25 to 30 ALS pre-trial Drug Testing happening at various institutions that seem to target specific gene/genes and seem to show better results if patients genetic details are known.

In my wife’s case, gene sequence testing done showed negative for all the major genes that are known to cause ALS.  So back in December 2018, we were advised to continue with Ibudilast which seems to help general ALS patients. The Genetic Test was done through MGH Boston under the guidance of Dr Merit Cudkowicz.