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.

Sunday, February 8, 2015

Is It Silly To Dream?

I didn't win the big Powerball jackpot last night, but I will admit that I thought about it. Don't we all dream about such things sometimes?

I realize that those windfalls can be curses, but I have a plan.  I think I could handle it. No new car.  I like the old one.  No new house.  I like the old one.  No lavish vacations.  I would miss finding the bargain travel.  But there would be some very new things --

Clinical Trials
Two ALS drug candidates that are stalled between trials for lack of funds would get moving.  The trials would be unlike any you have ever seen for ALS.  People with ALS and their caregivers would be part of the trial designs and it would be a very public process.  The trials would be accessible for people from Pittsburgh to Poughkeepsie and from Portland to Portland and from Poway to Pocatello.  These would be the trials that the world will watch unfold with the project status being very visible every step of the way.

Caregiver Care
Primary care for caregivers would become available at an ALS clinic.  Caregivers could get blood pressure checks, lab work, immunizations, and the basic health checks that they don't have time for today.  There might even be a partnership with a dental school to take care of that aspect of caregiver health that is so often neglected.

Advocacy
There would be some skilled and eloquent advocates for those with ALS.  Their job would be to address those who pose barriers to those with ALS and their caregivers.  And they would address them publicly, powerfully, and quickly.  Be it a government agency not knowing its own rules or a clueless entertainer making a tasteless quip, these advocates would send prompt and strong and visible messages that you don't mess with those dealing with ALS.

Obits
The ALS necrology project would be initiated.  It's simple and not expensive.  A searchable online database of obits of those with ALS would be built and continued.  It would become a vivid, continuing statement of all we lose to ALS.  Once the database is built and the process started, this would be a great student project to maintain.  No fundraising will be allowed.

Numbers
The animated infographic that we've needed for years to demonstrate how many people get ALS, how many people are living with ALS at any moment, and how many people die from ALS would be developed.  This would be done with design students and math teachers, perhaps in a contest format.  It would stop the myths and misguided use of prevalence in defining the impact of ALS.

Ratings
A Tripadvisor-like tool to evaluate and comment on those providing goods and services to people with ALS and their caregivers would be introduced.  This could raise the bar on a lot of providers, reward those who do well,  and stop much of the wheel-reinvention that characterizes the ALS caregiver's journey

Research
And with the other $100+ million, there would be investments in ALS research projects.  And those grants would be transparent.  People could look up who got what, when, and the outcome of each project would be part of that permanent, searchable record.

There.  I spent it. It didn't take long and my good old ob-la-di life goes on.  Some positive seeds are planted in the fight against ALS and some lessons are learned.  Sometimes it's not so silly to dream.

No comments:

Post a Comment