Micro-Management, Terrible Top Leadership
Pros
Solid mission, research based focused on a horrible inherited disease that only medical transplant will provide relief after the disease has progressed to end-stage.
Cons
Out of balance Executive Salaries and Bonuses as well as a 14% retirement account match. The majority of the most knowledgeable staff have left or been impacted by CEO terminations. BOD is very disconnected and has no clue how toxic an environment the current CEO has created. CEO background is heavily weighted to event based income. Here’s a nugget of truth, events are good for supporter acquisition, but attendance and participation in events is a loss leader in charity work. The CEO even terminated the principal gift advisors. A single principal gift can 10x all events based income. Finally, this organization is only surviving thanks to a few generous families who need to look only as far as PKD’s 990 to see that the majority of their generosity pays top staff huge salaries and covers a incredibly huge retirement match