ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, January 20, 2017

It Was Twenty Years Ago Today

Twenty years ago this morning we lost Mom to ALS.

She died from ALS.  She did not succumb to it.

In 1997 it was outrageous that people were still dying without any effective treatment, so long after Lou Gehrig's death.

In 2017 it's even more outrageous.  Over 2,500,000 people have died from ALS since Mom.

Not much has changed in two decades.  We raise funds and walk and support research, but the prognosis for a person today is mostly the same that Mom faced and that Lou faced.

Step back and look.  We have failed.  Individually and collectively we have failed.  Do we ever admit that?

A few days ago there was an ALS Association "Listening Tour" conference call.  I appreciate the opportunity to be heard.  Today I continue to be concerned with a large, influential organization not being able to be introspective and candid about problems and failures.  Dad always said, "Watch you don't break your arm patting yourself on the back."

"We have failed" doesn't make a great fundraising slogan, but we have failed.  We must admit it.  We must do things differently.

Twenty years.  It seems like yesterday.  It seems like forever ago.

Wednesday, January 18, 2017

Welcome to the 21st Century, Clinical-Trial Matching

If you've ever shopped for a clinical trial for ALS, you know that the shopping tools have been stuck in the 1980s.  Clunky.  Incomplete.  Passive.  Redundant in their flaws.

If you've ever shopped for a pair of shoes online, you know how shopping tools should work in the 21st Century.  Inviting.  Effective.  Sensitive to my preferences. Active.

We often hear about how it costs a billion dollars to develop a new drug.  Time is money.  Time is life for people with ALS.  Yet we continue to use archaic search tools or email notifications for clinical research projects.  People with ALS have been issued 1980s tools that are inefficient and ineffective for all stakeholders.

A few years ago I crossed paths with some folks whose work has developed into antidote.me . Take a look.  They have a business model that addresses a lot of problems that people face in shopping for the right clinical research opportunity.

Over the years we have talked.  I have complained.  They have listened.  I have suggested.  They have listened.  They have taken an interest in ALS.  I maintain that ALS can be a stress-test for a lot of areas of healthcare that need improvement.  They get that.

Yesterday on the right panel of this blog below the tweets, I inserted a snippet of code that gives everyone a portal into their newest edition of their clinical trial search tool.  I hope that it is helpful.  Give it a try. You might find something interesting.  Use their contact form to let them know what you think.  Perfect?  No.  A step into the 21st Century?  Absolutely.

So today we see that it is completely possible to have online search tools that are kept continuously up-to-date with the newest clinicaltrials.gov data.  That has been a big flaw in many old search tools.  We see a tool that includes all recruiting trials (and not just those from selected sponsors).  We see a tool that unsnarls the clinicaltrials.gov data into something readable and usable.  We see a tool that gives you some control of filters.  We see a tool that is easily sharable.

Yes, I still have suggestions -- more control over filters, yelp-like reviews, information like the number of seats left at a trial site.  I have every confidence that we can get there.  Today we see the giant leap we needed to welcome clinical-trial matching into 21st Century.  Thanks, antidote.me.



Note:  I neither seek nor receive any compensation for my work to improve the fight against ALS.