In 2016, the secret shopper project showed some customer service gaps that could be holding back clinical trial enrollment in ALS. Are thing...

The CDC ALS Registry is a product of the Agency for Toxic Substances and Disease Registry (ATSDR), a government agency, generously funded by...

 Hope.  It's so important to families dealing with ALS.  It's what keeps many of them going.  You hope for a better day tomorrow.  Y...

Dear Advisory Committee Advisors, FDA Staff, and, yes, Brainstorm Cell Therapeutics Management, As you know from hundreds of other comments,...

The ALS clock is running.  In the next few weeks, the FDA will make a decision regarding approval of NurOwn for ALS. Either way, another tri...

At the risk of giving some recent nonsense any more oxygen, I think it's important to document a few things. I try to live by the ...

  We have a Santa Claus problem. NIH We read of an NIH that has expertise and exerts leadership in other areas such as cancer or infectious ...

 We lost Sandy Morris to the stinking ALS this week. As many of you know, she was a huge influence for the better in what we called ALS Land...

We sign forms.  We agree to things in order to get treatments, both approved and experimental.  It's exactly the same thing as signing f...

Today we wait.  We wait for some therapy developers to do whatever they're doing.  We wait for regulators to do whatever they're doi...

Below are my comments submitted to the FDA Advisory Committee that will be meeting to address questions related to the Amylyx AMX0035 approv...

 Dear. CDC and ATSDR,   You can lead or you can choose to continue to mislead.  The choice is yours. ALS Prevalence and Incidence in the US ...

During the past week I have worked on finding the status of multiple ALS research projects.  You know, the ones that were hot topics ten or ...

On Wednesday, October 20, a group of people with ALS and caregivers who dub themselves "ALS Problem Solvers" met with nine top NIH...

Dear Chair DeLauro and Ranking Member Granger,   I write you as a concerned advocate for those with ALS (we lost Mom to ALS in 1997), a pers...

Anticipation.  Those were the great Heinz ketchup ads of the 20th Century.  The glass bottle with the narrow neck, the thick, quality ketchu...