Welcome to my website!
This spot is given to topics that may be of interest to folks and families managing Huntington's Disease, that's "HD." Our collective vision is a world free of HD, hence the name CureHD.com. It’s my kitchen table, bulletin board, junk drawer, desk top, photo album, bully pulpit and the trunk of my car here in cyberspace.
Let’s swap ideas, exchange information, have some fun together, collaborate on projects, promote causes, tweak some noses and stay in touch.
Guiding Principles
1.There’s a sucker born every minute. --P.T. Barnum
2. Never give a sucker an even break. --W.C. Fields
3. Don't look back. Something might be gaining on you. --Satchel Paige
4. It don’t mean a thing, if it ain’t got that swing. -- Duke Ellington
5. Take it easy—but take it! --Woody Guthrie
6. Speak truth to power. --A charge to Friends
Ain't got the scratch burning a hole in your pocket to buy a $100. ticket for a Mercedes? Seen enough amaryllises for ten lifetimes? Impractical to remortgage your digs to get to that fancy-schmantzy fundraisin' banquet? Well, this one's for you, my brother!
$10. buys you a chance to see the Glimmer Twins next March in Florida: airfare, tickets and a hotel. Owww! Benefits the New England HDSA!!! More info here!
And remember, it's Sir Mick! Best prize you'll ever take a chance on! "Jumpin' Jack Flash, it's a gas, gas, gas!"
Disease Name Shocker: Back to "Huntington's Chorea"
(02 Dec 05 - Healthwire) ZURICH- The International Bureau for Standard Health and Science Nomenclature announced here last night that their Subcommittee on Brain Pathology Rubrics had approved a proposal by an American research consortium to return to universal usage of the term "Huntington's Chorea." The term will be reassigned its previous Diagnostic and Statistical Manual III reference number. Experts report that the move will open the way to a similar ICD-9 reclassification, a similar revision of the Standard Inpatient Data Record designation and an executive order to unify it within the Defense Medical Surveillance System.
Lord van Rensselaer, the Dutch Minister of Health and Chair of the panel, said that he was unaware of any other similar return to a prior appellation. "Yes, after having approved Huntington's Disease not so many years ago, we were surprised by the suggestion that we go back to the future for Huntington's Chorea."
Under intense pressure from Americxan members, the European representatives relented after two days of debate and private discussion. "As the Americans continue to industrialize medical research, I've stopped being surprised and try to remain amused," commented Dr. Sir Philip Egan of the United Kingdom's National Health Service."
Dr. Tobias Scholl, president of the American Guild for Huntington's Research and Jedediah Clampett Professor of Neurolgy at the Merrimack Valley Medical College, explained that "the quickest way to cure a disease is to narrowly define it. We treat the chorea, we cure the disease. We're on the way now!"
Dr. Heather Tone, epidemiologist at The Gage Institute for Neurology in Cavendish, Vermont agrees. "As a child my grandfather used to say, "Why shoot at clay pigeons when you can surely hit the side of a barn? Hey, if you can cure it with word games and simplistic characterization, what the hey?"
Louise Chaste, Professor of Cellular Arrogance at the Western Washington Institue for Neurolgy, says, "You know we get patients with Huntington's Chorea here at the Movement Disorders Clinic all the time. Hopefully changing the name back will fix that!" Dr. Chaste stopped abruptly to tend to a patient banging on her office door screaming that she was late. " I bet that's one of them now. His appointment was for 2:30; it's 2:32! Can't he wait?"
"Families complain about cognitive changes with Huntington's. I listen and try to understand. But when I ask the patients they don't say much. I'm convinced it's a movement disorder and I'm simply chuffed we're back to Chorea, " explained Gifford Pope, Chief of Neurology at the Laydon Institute.
"It's all about the dineros," chided Dr. Francisco Eubenics of Pamplona, Spain. Show me a doc with a clinic looking for a grant and I'll show you the Motor subtests of the UHDRS. You show me an HC patient without any C, and I'll show you a psychiatric patient."
