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Posts Tagged ‘Lou Gehrig’s Disease’

Day 101 was last Thursday.  I was on my way to meet up with my brother, his wife, and my cousin for dinner in Georgetown.  I got down there early and had some extra time.  I spotted Brad sitting on a bench in front of Barnes & Noble.  There was something so calm and relaxed about him that I decided to see if I could give him my $10.

Brad in Georgetown (Photo: Reed)

He was waiting for a bus but said we could talk until the bus came.  Originally from New Jersey, Brad is somewhat new to the DC area where he works as an internet strategy consultant. 

Knowing that I had potentially very little time until his bus came, I got his email and asked if I could take a picture of him.  He said sure.  While I was taking pictures, I asked him what he was going to do with the $10.  He said, “I’d like to say that I am going to donate it, but it’s probably going to get used for dinner tonight.”

Right then his bus came and we parted ways.

Barnes & Noble Georgetown (Photo: Reed)

Later that night I ended up losing my small notebook that I take notes in, but luckily got it back when I retraced my steps and discovered that it had fallen out of my backpack outside of the Barnes & Noble and somebody had turned it in to the security guard at the bookstore.  

I got home that night and thought that I would just leave the blog entry for that day as it was…I didn’t get a lot of information about Brad, but such is life right.  However, I thought that maybe I would just Google Brad and see what I found.  I am so glad I did.  Had I not, I wouldn’t have discovered a much more beautiful story underneath the surface.

Before I go any further, I should let you know that when I found out what I am about to share with you I contacted Brad and asked permission to share this with the readers of my blog.

Brad’s mother, Joan Dancy, was diagnosed in 2002 with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease.  This is a disease that I have heard of all my life but I didn’t know much about it.  Here are some facts:

  • ALS can happen to anyone
  • ALS has no known cause
  • ALS is diagnosed in 14 people everyday
  • ALS affects 30,000 people in the US at any given time
  • ALS is always fatal 

 (source: http://www.joandancyandpals.com/facts.php)

Brad’s mother battled the fatal disease until 2006 when she passed away.  Later that year her fiancé, Terry Magovern (former personal assistant to Bruce Springsteen), founded The Joan Dancy & PALS Foundation.  The PALS stands for People with ALS.  Joan and her family and loved ones discovered that despite their urban location and proximity to numerous medical centers, there was a tremendous need for resources at the local level to help people afflicted with ALS.  Before she passed away she decided that somebody needed to change this.  Terry continued the work and in 2006 her dream became a reality when he launched the foundation which is committed to improving quality of life for ALS patients and their loved ones in the ways that matter most.  Sadly, Terry passed away unexpectedly in July of 2007 and the organization is now lead by Terry’s son Sean.  As an Advisory Board member, Brad is active in the organization and heads up some of the fundraising events that they do.

I spoke to Brad about what it was like dealing with this disease.  “It’s really tough because the disease moves very fast.  The body degenerates but the person’s mind knows exactly what’s going on.”  This was the case with his mother.  I can only imagine how difficult that must have been on Brad and his family..

Because there is no cure and because this disease is so hard on the individual and their family, groups like the Joan Dancy and PALS Foundation are extremely important.  According to Brad, the foundation holds support meetings once a month, about 40 people who meet to help one another improve the quality of life of those living with ALS.  

I was so touched by this story.  Maybe because I also lost my mother to a terrible disease…maybe because of the courage I felt from Brad in how he and others have managed to honor his mother so beautifully with the foundation.  I urge all of you to visit the website of this very special organization.  They survive through donations and proceeds from special events that they hold…hopefully I can make it to one of them this year so that I can personally experience the love that this group has for those living with ALS.

By the way, when I spoke to Brad this past Wednesday he said the $10 was still in his wallet!  I hope he will comment here and share with all of us how he uses the $10!

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