Huntington’s Disease—Let No More Leaves Fall

Apr 22, 2009

In March I was privileged to speak at the Illinois Conference on Huntington’s Disease.

I learned that Huntington’s Disease (HD)—like Alzheimer’s Disease, ALS, and Parkinson’s Disease—all originate from damaged brain cell mutations.  Sitting in the conference room with me were those who have been diagnosed with the disease, the loved ones who care for them, and family members who live with the threat of developing the illness themselves.  You see, the greatest horror of Huntington’s is that it is a hereditary disease that passes from parent to child, often striking up to 50% of family members!  At-risk young people live in dread of “crossing over” to becoming stricken with Huntington’s symptoms like involuntary muscle movement and cognitive decline.

I was especially moved by a display called the Huntington’s Disease Memory Quilt.  The quilt is an ongoing project, pieced with squares to commemorate the lives of those lost to HD.  Because Huntington’s Disease is hereditary, there were many quilt pieces arranged together for multiple family members afflicted by the disease. The effect was moving and staggering.  The top row contained a number of pieces in honor of the lost loved ones from just one family.  Another square which brought a lump to my throat and tears to my eyes depicted a semi-barren tree shedding its leaves, and read:

O Lord, I ask that you please
Let no more leaves fall
From our family’s tree.
May those who investigate
Find a cure.
Help those who care
Have strength to endure.
Hear our prayer, Dear Lord!

It went on to read, “Four fallen leaves—Bill, Billy, Ken, and Vera.”

Although Huntington’s Disease is a relatively rare disease that affects about 1 in 10,000 persons, the families that suffer from this killer often sustain a 50% casualty rate.  Here at Law Elder Law, we have decided to help work toward a cure.  There is a “Team Hope Walk for a Cure” taking place in Wheaton, IL on Sunday, May 17, 2009.  I am going to be there with some of our team.  If you would like to join us, we would love to have you on our team!  Click here to join us or to create your own team!  If you live outside of Illinois but still want to help, you can find a walk in your state by clicking here.  We hope many of our friends will be able to come join us on May 17th and help us Walk for a Cure!