Take a moment and vote today to help the KDA

There is some excitement at the KDA today.  Susanne Waite, KDA President Emerita and co-founder, has made it into the Top 10 and is a National Finalists for the Energizer "Keep Going" Hall of Fame Contest!    You can read the story by following this link: Coarsgold Woman Nominated for Charity Work.  The Kennedy's Disease Association will be receiving a $1,000.00 check for Susanne making it into the Top 10 Finalists!

Now the real work begins!

I am asking all my readers to please  take 30 seconds to vote today and every day through May 13th.  Click on the link below cast your vote now: 
www.energizerkeepgoinghalloffame.com/Finalists.aspx?finalists=SusanneWaite

You can only vote once per day, but you can vote every day through May 13th.     

The Energizer website will ask for your name and an email address.  Energizer states this is not being collected for any marketing purpose, but is their way to verify that only one vote per day per person is being registered. 

If she wins the Grand Prize - an additional $5,000.00 will be donated to the KDA by Energizer, Inc.
The remainder of the $15,000 prize, Susanne promises to divide up amongst these other non-profits:

• American Cancer Society
  
• Alzheimers Association
  
• Veteran's Association
  
• SPCA
  
• Central Valley Food Bank - 24% of those living in the Fresno area go without a meal each day
  
• Manna House
  
• Poverello House
  
• Terry's House
  
• Boys & Girls Club
  
• 4-H/FFA

Remember to vote every day.  Also, please forward this email on to your friends, family, coworkers and contacts and encourage them to vote each day now through May 13th.

Thank you for your help.

Is there a cost you could put on finding a cure?

I receive several comments a week on my articles as well as many email questions.  This morning I responded to an inquiry ... “I wasn't going to ask this as I can instantly give a bucket load of reasons why it can't be answered. But, I'm interested to know if you've ever wondered yourself. I think the question stems back to a piece you wrote on there being no money in curing rare diseases but it's something I've pondered since.  How much would it cost to find a cure?”

Before responding, I had to consider everything that I know and heard about Kennedy’s Disease research.  I do not believe anyone could ever put a realistic cost on financing research to find a treatment or cure.  The issue, in my opinion, is that not enough funding is made available for Kennedy’s Disease research because it is a rare disorder that does not garner much public attention.  Major pharmaceutical companies do not consider this type research a potential "cash cow" so they sit back and wait for some university to discover the treatment or cure and then perhaps buy the patent.  When the potential market (patient base) for a treatment or cure is roughly 1-in-40,000 across the world, it must be difficult for any corporation to justify the research expense unless there is some major return on investment afterwards.

If you read my blog last week, you saw the Dr. Taylor (and several others) published a paper on some research that looks very promising.  Paul will be our guest on the October 16th KDA chat room and will amplify and answer questions about this research.  In my opinion, smaller companies, for example AndroScience, have been looking for funding to continue their initial research on a potential treatment for Kennedy’s Disease.  ASC-J9 is something that looks promising, but I am sure AndroScience has to focus their attention on the acne cure and only dabble in other potential benefits of this compound.

In earlier articles I mentioned the time it takes to move a potential treatment or cure from the test tube, through fly and mouse models, to other testing, and eventually to human trials ... IF the drug continues to show promise and is safe.  I also understand that for those of us living with this mutation that remaining patient is very difficult as you see yourself, or a loved one, slowly decline in capabilities and health. 

Since the KDA is an all-volunteer organization and our donation base is rather small compared to the major non-profits (e.g., MDA, Heart Association, Diabetes Foundation, United Way, etc.), we try to encourage younger researchers to focus on Kennedy’s Disease research by providing “seed money” in hopes these scientists can continue their research while having time to pursue larger grant opportunities.  If we ever grew enough to be able to offer larger grants, we would probably focus our funding on projects like ASC-J9, IGF-1 for muscles, and now this latest research by Paul Taylor.  Until that end, we are a small fish in a very large pond and “hope” is mostly what we have to offer.

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.