Walk for HD – May 19, 2013

While most of this blog has been about self-improvement and making more money, today I want to talk a bit about Huntington’s disease. According to Wikipedia,

Huntington’s disease (HD) is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and psychiatric problems. It typically becomes noticeable in mid-adult life. HD is the most common genetic cause of abnormal involuntary writhing movements called chorea, which is why the disease used to be called Huntington’s chorea.

The disease is hereditary. It is not contagious and doesn’t spread due to infection, but rather it is passed down from one generation to the next. The Huntington’s gene is dominant, meaning that if one of your parents has it, you will have a 50/50 chance of being born with it as well.

The following is a MASSIVELY oversimplified explanation of how Huntington’s works: DNA has four kinds of nucleotides that comprise its “code.” They are guanineadeninethymine, and cytosine, represented as letters G,A,C,T. My understanding is that people with Huntington’s disease have too many expressions of GAC in a certain part of their 4th chromosome. That repetition of GAC is more or less an instruction for the body to make a protein that prevents nerve cells from doing their job. These proteins build up in the body over time and people begin to show symptoms as they age.

There is a ton of great research and even the possibility of a new treatment that can “reset the clock” on Huntington’s; but actually getting to the point where it becomes a viable treatment is a ways away. This is worrisome to me because the disease only really affects 30k people in the US. Compared to heart disease, cancer, and other number one health related killers in the US, my worry is that new treatments could get lost in the political red tape required to get drugs approved in this country.

As a result, my firm, Scaled Dynamics, is participating in a fundraiser to promote Huntington’s Disease treatment and research. Scaled Dynamics will match any money that my employees wish to donate from their paychecks. All of the proceeds will go to the Skewes, Vasquez, and Young HD Fundraising Page where they will ultimately go to the HSDA. You can read about the HSDA and their work here.

If you would like to donate, or would like to walk with us, please find this information below:

The Illinois Chapter of the Huntingtons Disease Society of America presents the 9th Annual TEAM HOPE WALK!  Help us to continue funding the mission of the Huntingtons Disease Society of America!  The past 8 Walks have helped raise over $375,000!  NEW THIS YEAR!!!! The Walk has been moved to the Naperville Riverwalk in downtown Naperville, Illinois.  The Riverwalk offers a walker, wheel chair, wagon, and stroller friendly path.  Dogs are very welcome as long as they remain on a leash.  The Riverwalk is WELL shaded.  Please remember to bring enough non-alcoholic drinks for yourself as well as any dogs you bring along.  After the Walk, stick around for our family style hotdog lunch (be sure to bring your lawnchair), games for the kids, and great conversation with friends. The Riverwalk also offers a playground for the young ones that attend as long as their parents are with them.  We will start at the Grand Pavillion at the far west end of the “Beach” parking lot.  We hope to see you there!!  More information can be found on our chapter website at http://www.hdsa.org/il.

Date Sunday, May 19, 2013
Location Naperville ,  Illinois
Contact Dave Hodgson


About the HSDA:

The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. The Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States. The Society is comprised of 45 local chapters and affiliates across the country.

Update: Apr 27, 2013: I’ve just been made aware that t-shirts are also available here