My What I Plan to do When I Win the Lottery List

LC reader  and college friend AC posted her lottery win list on her blog, A Bit South of Normal.  It got me thinking about what I would to (although I'd have to start by actually buying lottery tickets).  Never mind that lottery tickets are a sin in Texas and South Carolina and are only legal because demons from Hell possessed enough legislators to make it so (I was raised a SC Episcopalian, so we don't do sin), here's my list:

1.  Find that mysterious Huntington's Disease hospital in Italy where Thirteen from House ran off for treatment.
2.  By a wing for Wes.
3.  Buy myself a luxurious villa convenient to said HD hospital with the Wes Wing. 
4.  Hire Rob Lowe to be Wes' Wes Wing personal orderly (I crack myself up). 
5.  Hire Jake Gyllenhaal as our villa pool boy.  Merely for the visuals.  Don't get any ideas.  Now, if he and Rob get any ideas, far be it from me to stand in the way.  With a video camera.  An HD video camera.  With a zoom lens.  And good lighting.   
6.  Hire the Komen Foundation's PR folks and make HD the next breast cancer.
7.  Hire the Turtle Creek Chorale to do a Sing for the HD cure concert in the Roman Coliseum.
8.  Buy a fleet of Alfa Romeos for the patients in the Wes Wing to go on excursions.
9.  Stock up on insanely expensive champagne for the day when we...
10.  Actually find a cure for HD.   

Huntington's Breakthrough!

My regular readers know that the fight against Huntington's Disease is a cause near and dear to my heart.  The NBC Nightly News recently reported on a potential breakthrough.  The report begins at the 14 minute mark:

Visit msnbc.com for breaking news, world news, and news about the economy

You can find more information about Huntington's (and an opportunity to donate!) here. 

National Call In Day for Huntington's Disease

Today is a national call-in event in support of the Huntington's Disease Parity Act.  I just called my Congressman and encouraged him to support the Act which would make it easier for people with HD to access Social Security benefits and would eliminate the current crazy two-year waiting period for Medicare. 

Applying for Disability can be a long, frustrating process for HD patients.  Once approved for disability, there is a pointless two-year waiting period before Medicare can be accessed.  This bill would speed up the application process by eliminating out-dated criteria used by Social Security for HD patients.  The bill would also eliminate the two-year waiting period. 

HD is a rare disease that is often overlooked.  Help shine some light by calling your Member of Congress and Senators today.  Thanks!   

Let's Find a Cure for Huntington's

You may or may not have noticed that my blogging has been light lately. I haven't even mentioned the Globes nominations! How can that be? Well, my life has been really full. My partner, Wes, has been diagnosed with Huntington's Disease, also known as Huntington's Chorea. Huntington's is a degenerative neurological disease for which there is no cure and little treatment. It's genetic and typically manifests itself in middle age.

Not that Wes is middle aged, mind you (I have to find the humor. You should have heard my response when the doctor said he wanted to send Wes for a swallow study. The nurses are still scandalized).

All kidding aside, Huntington's is pretty horrific. It causes a great deal of involuntary movement, similar to MS, and cognitive abilities are severely degraded. He has a hard time figuring out simple tasks. He has difficulty swallowing, he chokes often, he falls and hurts himself and breaks things. We're currently trying to get in-home help because he's at the point that he can't be left alone while I'm at work. The heartbreaking part is, it's only going to get worse and there's little doctors can do about it. One, count 'em, one med has been approved for treatment of Huntington's. Wes recently started taking it, so we'll see if it helps.

So, if you're looking for the perfect Christmas/Hanukkah/ Kwanzaa/Solstice/New Year's gift for that person who has everything, consider a donation to the Huntington's Disease Society of America. The money goes to research, and HDSA needs every dime it can get. Huntington's is little known and gets a fraction of the research money that big hitters like The Cancer Society and the Heart Fund take in. Those are worthy causes but so is Huntington's, so please give. Thank you.