Empathy – How do we reach a wider audience?

The Peaceful Planet blog has had a couple of nice articles on empathy. Here is an excerpt from one of the articles. "The English word empathy literally means in passion or in suffering with someone else. It derives from the Greek pathos—suffering, emotion, feeling—and can mean that we feel the same emotions as someone else while they feel them, as if by some spiritual osmosis or tele-empathic ability. Most commonly, though, empathy refers to an ability to comprehend the emotions and motivations of another either because we have felt similar emotions or because we can imagine them.

Empathy isn't a warm and fuzzy sort of thing. Having empathetic understanding doesn't mean we need to sympathize or agree with someone, and it doesn't mean we need to take on or approve of another's feelings just because we can sense or understand them. Empathy only means that we're able to feel and see things from another's vantage point—grief, sadness, joy, happiness, motivations, needs—even if we don't share the same viewpoint and emotions. Empathy, then, is knowing that others are like us, no matter who they are or where they live or what they do. Understanding another by imagining what it's like to be in his or her shoes and what the world looks like—from his vantage point—means taking off our own rose-colored sunglasses and putting on those of another: that's empathy."

As a member of the KDA board of directors, I realize the importance of research and education if we eventually expect to have a treatment or cure for Kennedy's Disease. Unfortunately, both research and education cost money; and that comes from donations.


 
I often struggle with why more people are not empathetic to the impact of Kennedy's Disease on a person and his/her family.

• Is it because Kennedy's Disease is a rare disorder and most people have not heard of it.
  
• Is it because it does not really show itself until the 30's - 40's-or- 50's?
  
• Is it because it is a slowly progressive disorder instead of something immediate and devastating?
  
• Is it because it attacks mainly men?
  
• Is it because it is not considered life threatening?
  
• Is it because the Kennedy's Disease Association (KDA) is just a small, relatively unheard of, all-volunteer non-profit organization with minimal overhead and not advertising budget?
  
• Is it because the board members and committee volunteers have no viable experience in fundraising like most of the larger non-profits?
  
• Is it because we cannot find a celebrity or well-known sports person who will endorse and support (become a spokesperson for) the KDA?
  
• Or, is it because those of us living with the disease have done a poor job of educating the world about the disease and its impact on our families?
  

Most likely, it is a combination of all the above points.

The majority of the financial support that the Kennedy's Disease Association receives today comes from the families and close friends of those with living with Kennedy's Disease. That is understandable, but also troublesome, because our message only reaches a small portion of the public.

Finding a treatment or cure for Kennedy's Disease takes time and costs money. When dealing with a genetic issue (one involving a mutation in the DNA), there is no simple treatment. And, it becomes even more difficult to find a cure. My concern remains that without the capability to entice more donations or corporate sponsorship, few researchers can afford to focus on this disease. Meanwhile, pharmaceutical companies remain focused on the 'big-ticket' drugs because that is where the money is. It is difficult for a large corporation to justify the research and clinical trial expense for a disease that only affects 1-in-40,000 people.

Unfortunately, until we find a way to reach a larger audience for financial support, we will continue to do what we have always done ... just get by.

I would appreciate your thoughts on what else could be done to get the message out there and to increase our base of supporters.