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.

Tuesday, September 26, 2017

What's A "Partner"

https://www.merriam-webster.com/dictionary/partner


Organizations like to refer to their partners in the fight against ALS.  It's a feel-good concept.  Everybody loves supportive partners.  Partner is also word that is vague. It clouds the true nature of the relationship. It flies in the face of transparency that not-for-profits say they strive for.

Huge donor?  Major donor?  Minor donor?  In-kind donor?  Volunteer?  Vendor?  Client?  Party to a contract?  Party to a handshake?  One with implicit or explicit access?  Endorser?  Endorsee?

To live up to the spirit and letter of transparency, how about simple crystal clarity on specific monetary arrangements and promises and expectations between partners?

It's simple.  It's good for everyone involved because transparency is good for everyone involved.




Saturday, September 9, 2017

MIngle, If Not To Help, At Least To Learn

Dear ALS Organizations, Drug Developers, DME or Technology Suppliers, and Anyone Else Who Is Paid To Help People With ALS,


There are places online where people with ALS go to get help.  Some are your own message boards.
Some are on Facebook.  They are not hard to find.  These places are extremely useful and efficient for people with ALS and caregivers to get support.

As a man with ALS once said about paid ALS professionals avoiding participation in online support, "It's like they don't want to mingle with the unclean masses."

You need to mingle.

It is absurd when people who participate in online support groups constantly have to tip off organizations and companies that they have issues that need attention.

It is unconscionable for an ALS organization to host an online support group (with a big red logo at the top of the page) where people seek help only to find out later that the ALS organization itself doesn't take the time to look regularly, let alone participate.

You all need to mingle.  If you refuse to supply help in a medium that is efficient for the people who seek assistance daily, then at least look and learn.

The unclean masses await your respect and interest.