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December 31, 2003

Health Savings Account's (HSA's)

RangleMD Blog has an interesting take on the Health Savings Account's that were approved in the recently passed Medicare Reform Bill. I'll cover this potentially important feature in greater detail in a later post. Until then, this is what Dr. Rangle has to say:

"With few exceptions a patient can spend the money on just about any health care need and see any physician or specialist and get any test without having to worry about getting the approval from their HMO. But the amounts in this account are limited and patients will need to be cost conscious about their health care expenses for the first time. The hope is that patients will begin to "shop around" for cheaper drugs, tests, and physicians who charge less for regular office visits. Of course currently patients do not need to be aware of the prices of various drugs, tests, and professional services and so few if any of these prices are actually advertised or even known by the people delivering health care. In theory as millions of people start having HSAs the health care industry will wake up and begin to compete for these patients, make their pricing known, and generally start behaving like a capitalist system without interference from HMOs or government price controls. In a capitalist system the consumer is supposed to be the winner."

Read the whole piece here.

Posted by Dave at 07:49 PM | Comments (0) | TrackBack

December 30, 2003

Cognition In Early Huntington's

Sometimes reporting on the many advances in research involves reporting on the the not-so-positive news. In this case, a study has found that certain cognitive abilities decline early in Huntington's Disease. Specifically, in early Huntington's, patients showed poorer attention skills; decline in ''executive functions' which includes abstract thinking, planning, carring out plans and decision making.

This is one of the many reasons HD patients are unable to hold and keep a job years before the government determines they are 'disabled' and can then get support. Here's the study abstract:

Neurology. 2003 Dec 23;61(12):1702-6.

Profile of cognitive progression in early Huntington's disease.

Ho AK, Sahakian BJ, Brown RG, Barker RA, Hodges JR, Ane MN, Snowden J, Thompson J, Esmonde T, Gentry R, Moore JW, Bodner T.

University of Cambridge (Drs. Ho, Sahakian, and Barker), UK.

OBJECTIVE: To examine the pattern of cognitive decline in early Huntington's disease (HD). METHODS: The authors studied 61 patients with mild to moderate HD who had at least three annual neuropsychological assessments using the Core Assessment Program for Intracerebral Transplantation in Huntington's Disease short battery. A subset of 34 patients had additional neuropsychological tests, and another subset of 21 patients was assessed annually on the Cambridge Neuropsychological Test Automated Battery. Neuropsychological measures that changed significantly over time were submitted to a multiple analysis of covariance to explore associations with demographic and neurologic indices. RESULTS: Patients showed a progressive impairment in attention, executive function, and immediate memory, with timed tests of psychomotor skill being particularly sensitive to decline. In contrast, general cognition, semantic memory, and delayed recall memory were relatively unaffected. CONCLUSION: The profile of cognitive performance shows selective and progressive dysfunction of attention and executive function in patients with mild to moderate HD, consistent with frontostriatal pathology at this stage of disease.

PMID: 14694033 [PubMed - in process]

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December 29, 2003

Dateline NBC Features HD

HDSA Bulletin

HD Featured on Dateline NBC
Friday, January 2, 2004
Postponed from August 15, 2003 broadcast

Huntington’s Disease will be a featured story on Dateline NBC this Friday, January 2, 2004. The show, which visited Terence Cardinal Cooke Health Care Center in New York City and the Carr Family in Georgia, will air at 8 p.m. EDT. HDSA would like to thank Anthony Lechich, M.D., medical director at Terence Cardinal Cooke and David Saks, CSW, the social worker for the HD unit at Terence Cardinal Cooke for opening their facility to Dateline NBC and for their past and future help in long term care initiatives. Please consult your local television listings for further information or go to www.nbc.com/nbc/header/TV_Schedule. As always, stories may be bumped at the last moment to make way for late breaking news, but this broadcast information has been provided to HDSA by Dateline as of December 29, 2003.

Please share this information with your friends. We hope that you will have an opportunity to tune in this Friday to Dateline NBC.

Posted by Dave at 08:10 PM | TrackBack

Great Gene Therapy News

Great news!

Researchers have found a gene therapy that seems to show great promise in treating Huntington's Disease. They found that in a mouse model they were able to increase the brain's production of 'ciliary neurotrophic factor' which improved early symptoms of Huntington's Disease and appeared to control the progression of HD. Here's an excerpt from the article on the discovery:

"Zala and colleagues tested ciliary neurotrophic factor in a mouse model of the disease that is similar to the human version.

They genetically engineered a virus and injected it into affected areas of the mouse brain.

The virus infects cells and inserts DNA that encodes for ciliary neurotrophic factor, modifying the cells to produce the protein themselves.

The researchers found that the viral system provided long-term delivery and that it is reliable, effective and free of side effects associated with drugs.

They also say that their work is more relevant than similar research because the animal model they used is more similar to its human counterpart."

Read the whole article from the Better Human's website. The study was reported in the Journal of Experimental Neurology.

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Diving For Huntington's

I love stories like this!

Derrick Best is spending 24 hours underwater to raise money for Huntington's Disease. From the article:

"Best, manager of Waterworld Tours, submerged himself in the balmy waters surrounding the Santa Maria ship at West Edmonton Mall. The stunt marked the beginning of his 24-hour underwater marathon to raise awareness and donations for Huntington's Disease. By the time he surfaces today, Best hopes to have raised $24,000 for research."
You can read the whole article here. Thanks Derrick!

Posted by Dave at 07:44 PM | Comments (0) | TrackBack

December 28, 2003

Brain Cell Death Discovery

HD Lighthouse has a post on a discovery that helps explain why brain cells die after a stroke. Researchers also found a way to inhibit the resulting chain reaction. Here's an excerpt of Jerry's comments and be sure to visit the website to see the whole story:

"Glutamate was thought to be a primary cause of cell death in Huntington's disease (HD). Drugs that would block the action of glutamate were declared promising treatments for HD. Years ago dextromethorphan, found in OTC cold preparations, was taken as an ineffective treatment for HD. Today Amantadine , riluzole and remacemide are glutamate blockers of interest to researchers. The pursuit of glutamate blockers has suggested but not delivered any treatment to slow the progression of HD in humans. "

Posted by Dave at 07:18 PM | Comments (0) | TrackBack

December 27, 2003

Election 2004

It’s that time again – The Election Season.

The HD Blog will be covering the election with an eye on how the candidate’s positions affect the Huntington’s Disease community. Since Huntington’s Disease is unlikely to be a campaign issue, our coverage will focus on candidate positions, statements, and actions on topics such as research, genetic discrimination, Medicare and Medicaid reform. These are the topics that aren’t likely to make the front page of your local paper which is why we are going to focus on them here.

Comments will be left open here and you are encouraged to add your own thoughts. However, I reserve the right to delete antagonistic, off-topic and blatant candidate ads. This political season looks to be ugly but that doesn’t mean that our discussions here have to be.

Posted by Dave at 11:52 PM | Comments (0) | TrackBack

December 26, 2003

Happy Anniversary!

Well...it's been six months since this blog started. To the best of my knowledge, HD Blog was the first blog dedicated to a specific disease. Since that first post on June 26th, there has been over 250 posts.

Traffic to the website has been surprisingly strong and it is continuing to grow. Today, HD Blog is one of the most heavily visited HD websites and it is one of the busiest health/medical blogs on the internet. All this with almost no websites linking to us. That means we are growing by 'word-of-mouth'. Thank you!

There is still much to do here. I'm adding a section focused on the 2004 elections. There will also be a slight redesign with more links to other websites. I'll also be increasing efforts to let other blogs know about Huntington's. I'll also be adding a glossary and other reference material.

Keep visiting and be sure to tell your friends about this website!

Posted by Dave at 05:01 PM | Comments (0) | TrackBack

December 25, 2003

Merry Christmas

I would like to take this moment to wish everyone a very merry Christmas!

Posted by Dave at 11:59 PM | Comments (1) | TrackBack

An HD Christmas Story

I came across this very touching story called "There Once Was A Man" written by Allison Chambers Coxsey. While the ending is sad, the story demonstrates wonderfully that those in the more advanced stages of Huntington's are still very special individuals. Here's an excerpt:

"He told me many things about his life before Huntingtons. He was a cement worker from, of all places, Cement, Oklahoma. He once had a family and had two grown children. He carried their photos in his wallet and proudly showed them to me again and again. He spun yarns in his garbled speech, but somehow, I understood. "

"It was Christmas and just like every year at Christmas, the church took up money to buy fruit and candy to give to each member. A couple of weeks before the holiday, the Pastor stood up and went through the same laughter filled ritual. Several who had money to burn gave enough to cover the cost. Some gave a couple of dollars. Each would stand up and make a pledge of what they were going to donate. Then Harold stood up...I caught his hand and whispered to him to him to sit back down. I was sure he was confused as to what was going on...I was wrong. Harold knew exactly what was happening. In his slurred speech that usually no one but me and God understood, Harold spoke. Everyone in that church understood what he said that day. "I give, I give..." He pulled out an old, broken wristwatch and held it up high..."I give, I give." The silence was deafening.

Harold finally sat down next to me, still mumbling, "I give, I give." He had given. Much more than anyone in that sanctuary on that cold winter's day. I fought back tears, knowing that watch was all he had and he was willing to give it to us. "

Reading the rest of the story may be uncomfortable for some who deal with HD on a daily basis but I do encourage those who are not very familiar with Huntington's Disease to go to Allison's website and read the whole story. In it you will see why so many are working so hard (with so little) to find a treatment for this terrible disease.

On a personal note...I would like to thank Allison for writing this wonderful story!

Posted by Dave at 07:39 AM | Comments (0) | TrackBack

December 24, 2003

Choice In Drugs

The new 700-page Medicare bill has two provisions that could make some patients very happy. The first provision allows doctors to prescribe any medication they deem "medically necessary" for Medicare patients, even if it isn't part of the insurance company's approved drug list.

The second provision requires any company offering a drug benefit should have at least two comparable drugs listed in every treatment category. Since no one drug works for every person this is good news.

What's the downside? These requirments could escalate costs. See this article from the New York Times for details. (Hat tip to The Bloviator.)

Posted by Dave at 05:37 PM | Comments (0) | TrackBack

December 23, 2003

Grape Juice Benefits?

Are you doing everything you can to keep yourself healthy?

If you've been following HD Lighthouse you know about the benefits that blueberries may offer those with Huntington's Disease. The Future Pundit blog reports on a study showing that grape juice may also offer similar benefits.

Here's a quote: "The Concord grape juice findings are not surprising," explains Joseph. "We have seen similar effects in the work we've done in blueberries."

"The researchers point to several factors as potential mechanisms of action, including increased dopamine production and a potent overall antioxidant effect. According to previously published USDA studies, Concord grape juice has the highest total antioxidants of any fruits, vegetables or juices tested."

Visit the Future Pundit blog and also read about blueberries, blackberries and spinach.

Posted by Dave at 08:51 PM | Comments (0) | TrackBack

Never Giving Up...

Power Line Blog has a wonderful story where a mother's love and persistence saved her son's life. She trusted her instincts and didn't give up. It's a great story to read.

I know this is a good doctor. He states in the article "In my first year of medical school I was taught that a good indicator of something being wrong is that the mother of a child thinks that there is something wrong." Read the whole thing here.

Posted by Dave at 08:33 PM | Comments (0) | TrackBack

Embryos & CAG Expansion

The Huntington's Disease research news has been a bit sparse from the Mayo Clinic the last few years. Back in July I wrote this about their using Huntington's Disease Researchers to study golfers and their 'yips'. Well, they just got a HD study published. It's a small study but it does provide a useful clue to the disease.

Until now it's been a bit of a mystery why children of men with HD tend to have higher CAG counts than when the gene is passed from the mother. Until the assumption has been that women produce their eggs at birth, all with about the same CAG count, while men produce sperm throughout their lives giving increased opportunity for the CAG count to expand (increase).

This study on HD mice appears to point toward to a gender-specific reaction in the embryo and not the sperm as a cause of the expansion. This is long way from offering a therapeutic but it gives researchers valuable clues. Lets hope we see more from the Mayo Clinic in the near future. Here's the study abstract:

CAG repeat lengths in X- and Y-bearing sperm indicate that gender bias during transmission of the Huntington's disease gene is determined in the embryo.

Kovtun IV, Welch G, Guthrie HD, Hafner KL, McMurray CT.

Molecular Pharmacology and Experimental Therapeutics, Mayo Clinic/Foundation, Rochester, MN 55905.

The size of the CAG tract at the Huntingtons Disease (HD) locus upon transmission depends on the gender of the parent. However, the basis for the parent-of-origin effect is unknown. To test whether expansion and contraction in HD is imprinted in the germ cells of the parent, we isolated the X- and Y- bearing sperm of HD transgenic mice. Here we show that CAG repeat distributions in the X- and Y-bearing spermatozoa of founding fathers do not differ. These data show that gender-dependent changes in CAG repeat length arise in the embryo.

PMID: 14688268

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December 22, 2003

Dean's Healthcare Record

The Business Word blog excerpts a Washington Post article on Howard Dean's efforts in improving insurance coverage in Vermont. Check it out here.

Posted by Dave at 08:05 PM | Comments (0) | TrackBack

Juvenile HD & EEG's

This is an interesting study on Juvenile Huntington's Disease. In addition to the other differences from standard Huntingtington's Disease they've found a very high rate of abnormalities in the electroencephalographic (EEG) readings

Epileptic Disord. 2003 Sep;5(3):145-8.

EEG characteristics in juvenile Huntington's disease: a case report and review of the literature.

Landau ME, Cannard KR.

Neurophysiology Section and Movement Disorder Section, Walter Reed Army Medical Center, Department of Neurology, UNITED STATES.

The clinical features of Juvenile Huntington's Disease (J-HD) differ from those of the more common adult-onset form, and include cognitive decline, parkinsonism, myoclonus and seizures. A paucity of literature is available describing the electroencephalographic (EEG) findings. We describe the clinical and EEG characteristics of a patient with genetically confirmed J-HD. A review of previously published cases yielded EEG descriptions in only 23 patients whose disease onset was prior to the age of 32, and only 14 of these were prior to the age of 20. Epileptiform abnormalities were noted in 17 (74%), which was considerably more common than in the adult form. Generalized discharges were noted in nine, with six having polyspike and wave. The remainder had focal or multifocal epileptiform discharges. With genetic testing now available, refinement of the EEG data will be possible. Copyright John Libbey Eurotext 2003.

PMID: 14684349

Posted by Dave at 07:41 PM | Comments (0) | TrackBack

December 20, 2003

Lexapro -vs- Paxil

A lot of people with Huntington's Disease take Paxil for depression. It's a relatively safe medication with a good track record.

Now there may be a better choice. In a study sponsored by the manufacturer, the anti-depressant Lexapro had significantly fewer side effects than equivalent doses of Paxil.

Nothing in this study gives any indication on whether Lexapro will work as well or better than Paxil for Huntington's Disease patients. Here's an excerpt:

"More than three times as many patients receiving Paxil - 22.6% - withdrew from the six-month study due to side effects compared with those receiving Lexapro; 6.6% of the Lexapro patients quit the study.

Sexual dysfunction and major weight gain occurred in the Paxil group more than twice as often as in the Lexapro group.

According to the data, which was presented at the American College of Neuropsycopharmacology Meeting in Puerto Rico last week and made public to Dow Jones Newswires on Wednesday, 30% of the men taking Paxil experienced problems ejaculating, while only 15% of the men in the Lexapro group did. Of the Paxil patients, 26% weren't able to orgasm and 23% said they had decreased libido. That compares with the Lexapro group which saw 6% of the patients unable to orgasm and 5% saying they had decreased libido.

There were also more than twice as many patients in the Paxil group whose body weight increased by 7% or more during the study. The only side effect that occurred more often in the Lexapro group was diarrhea."

As always...follow your doctor's advice when it comes to medication, not what you read online.

Posted by Dave at 04:32 PM | Comments (2) | TrackBack

December 19, 2003

Hospitals Trying To Help Uninsured

RangleMD points to this article on the 'A Chance to Cut is a Chance to Cure' blog. Hospitals are bound to provide services for Medicare patients at the lowest price. That sounds good in principle but it prevents hospitals from discounting their rates for indigent patients below the Medicare rate.

Well some are trying to change that both in the legislatures and in the ranks of the medical profession. Here's a clip:

"A new Connecticut law, which went into effect in October, makes it harder for hospitals to sue patients and to seize their bank accounts or place liens on their homes. That law also slashes interest rates charged on patient bills to 5% from 10%. In Illinois, state legislators are weighing laws that would end what they call "discriminatory pricing," the practice of billing uninsured patients more than insured patients -- on the theory that uninsured people tend to be minorities against whom it is illegal to discriminate. In New York, a pending bill in the state legislature would limit the amount hospitals could bill poor uninsured patients to no more than the sum Medicare or private insurers would pay, whichever is larger."

It's a good read from an excellent medical blog...check it out.

Posted by Dave at 10:30 PM | Comments (0) | TrackBack

December 18, 2003

Pathetic PETA

I got an email from Scott Burgess at the Daily Ablution blog. He's put up a post on PETA (no...not People Eating Tasty Animals, the other one) and their extremism. He points to an article in the Boston Herald about PETA activists distributing flyers to children entitled "Your Mommy Kills Animals". He includes this clip:

"The fliers include a color drawing of a woman plunging a large bloody knife into the belly of a terrified rabbit. The fliers urge kids to "ask your mommy how many dead animals she killed to make her fur clothes."

And the sooner she stops wearing fur, the sooner the animals will be safe. Until then, keep your doggie or kitty friends away from mommy - she's an animal killer."

You may wish to check Scott's blog out. Also, be sure to read "The Dark Side of PETA" and their deceptive crusade against the Huntington's Disease Society of America (HDSA). You can also read about the groups PETA approves of here and here.

Posted by Dave at 10:02 PM | Comments (0) | TrackBack

December 17, 2003

Medical Blogs

Short day today... Here's a link to an article on Medical Blogs from the American Medical Association (AMA).

Posted by Dave at 11:04 PM | Comments (0) | TrackBack

December 16, 2003

Dr. Frist's Plan

The Business Word has an excellent post on Senate Majority Leader Dr. Frist's three-year plan to reduce the number of uninsured Americans. It ain't goin' to be easy to accomplish that one folks. They tell you why.

Looks like this will be one of the new political hot potatoes the next few years.

Posted by Dave at 10:16 PM | Comments (0) | TrackBack

December 15, 2003

72 Miles For Huntington's

An English Lawyer ran 72 miles in 24 hours to raise money for Huntington's Disease. His comment:

"I got very tired towards the end, but never felt like giving up. I've been planning this challenge for some time, so I'm delighted to have achieved it."

You can read the brief article here.

Posted by Dave at 10:22 PM | Comments (0) | TrackBack

December 14, 2003

Nationalized Medicine Part II

Dr. Rangle posts on the problems with Nationalized Health Care (single-payer system) and references this libertarian webpage. Here's a few highlights:

A quarter of a million Canadians (out of a population of only 26 million) are now on waiting lists for surgery.

The average waiting period for elective surgery is four years.

Women wait up to five months for Pap smears and eight months for mammograms.

Since 1987, the entire country spent less money on hospital improvements than the city of Washington, D.C., which has a population of only 618,000.

There are more MRIs (magnetic resonance imagers) in Washington State, which has a population of 4.6 million, than in all of Canada, which has a population of 26 million.

The first thing that is cut under nationalized health care is care to the seriously ill and dying. If you're wondering why this has to be read this about what happened in Britain when they created their National Health Service (NHS):

"With the adoption of national health insurance, Labour Minister Dr. David Owen predicted, "We were going to finance everything, cure the nation and then spending would drop." Unfortunately things didn't work out exactly as planned.

"The first problem with Britain's National Health Service was skyrocketing demand. With health care paid for entirely by the government, there was no reason not to go to a doctor. Why take aspirin or wait out a cold, when professional medical care is free? As Michael Foot observed, within months "the demand [for health care] was exceeding anything [its creators] had dreamt of." First-year operating costs of NHS were 52 million pounds higher than original estimates.

"NHS soon found itself in direct competition for funds with national defense, pensions, and all other governmental functions. Budget cuts for NHS quickly followed. British economists John and Sylvia Jewkes estimated that between 1950 and 1959 the United States spent six times more per capita on hospital construction than England. As a result, there was a steady deterioration in the quality of British medical care."

"By 1977, British general practitioners rarely had any medical instruments except for stethoscopes and blood-pressure meters. They had to send their patients to hospitals even for such routine procedures as X-rays and blood tests. The waiting time for routine, non-emergency surgery had increased to years. 7 By the mid-1970s, more than 700,000 English men, women, and children were on hospital waiting lists at any given time. 8 The average British doctor now has over 3,000 patients, compared to 500-600 for the average American doctor. NHS doctors spend an average of less than five minutes with their patients, who usually wait hours to see them."

Britain then started improving their health care by instituting reforms that allowed for private health insurance and non-governmental doctors and hospitals. Now, in England, there are more people enrolled in private health plans, using private doctors and hospitals than are using the National Health Services (NHS) system.

Posted by Dave at 12:33 PM | Comments (0) | TrackBack

Health Blogs

The San Antonio Express-News has given the health blogs some press coverage. (Sadly, not this one.)

Hat Tip to Medrants (also quoted in the article) for the link. An excerpt:

"Blogs are an exciting new medium that anyone can use," says Julie Hillan who has studied blogs at Rensselaer Polytechnic Institute in Troy, N.Y. "Health blogs can be powerful tools providing patients a vehicle for personal expression and emotional support."

Some health blogs are little more than clipping services, however, containing lists of links to news items and columnists. Others add commentaries on the hot-button topics of the day. Then there are the online journals, written by doctors, nurses and other health- care professionals as well as patients and their loved ones, that describe day-to-day activities, often in excruciating detail. For those who don't like to type, there are even audio blogs that allow bloggers to "phone in" their daily messages so visitors can listen through their computer speakers."

Posted by Dave at 11:36 AM | Comments (0) | TrackBack

Research Trials: Ethics

The blog, A Chance to Cut is the Chance to Cure, has an excellent posting on ethics and drug trials. Here is one clip:

"Then, in the spring, Thomas was able to join a tiny test of an experimental radioactive drug -- and his tumor shrank by 33% after the first dose.

But despite the improvement, he was told that he wouldn't be given any more of the drug after his third dose in August. He was approved for only three doses -- a condition made clear on the consent form the Tomenys signed in the spring when they agreed to participate."

Read the whole thing.

Posted by Dave at 11:13 AM | Comments (0) | TrackBack

December 13, 2003

Oh Canada? No Canada...

"It has been said that Seattle mirrors Canada in its tolerant attitudes, but there is a dark side to this utopia across the border."

The Seattle Times has an opinion piece written by a Canadian who moved with her husband to the United States. She's glad to be gone from Canada and she isn't afraid to say why. Here's what she had to say about the Canadian health system:

"Speaking of strikes. There are a lot of unhappy workers in Canada. ...Even the doctors have "worked to rule" — offering minimum health care to their patients to force the government to comply with their demands.

Health care — Speaking of doctors, every Canadian has experienced or knows of a family member who has a nightmare health-care story. It may be free but that doesn't mean it's good.

Hospitals are miserable. There are long waiting lists for the most basic treatments and operations. When we went to an American hospital, it was like entering a five-star hotel. I hear Americans complain about the cost of medical bills but I would rather my child be alive and have a bill to pay than to be dead at no charge.

In Canada, there is one system of health care for everyone — except the elite or government bureaucrats, who go to the U.S. and pay for decent health care."

This is why I am against a "single-payer" health system in the United States. The rationing of health care services hurts patient care. Those who get hurt the most are those with the "incurable" diseases - such as Huntington's Disease. We deserve better than that.

Posted by Dave at 10:47 PM | Comments (0) | TrackBack

December 12, 2003

3NPA

HD Lighthouse has a very interesting piece on 3NPA, Suger cane, and a bit of the hair of the dog that bit 'ya.

Check it out.

Posted by Dave at 06:30 PM | Comments (0) | TrackBack

December 11, 2003

Blogger Injured

A little off topic...

A well-known blogger (xlrq) was in a serious accident and other bloggers are filling in until he is back on his feet. You can read the details (written by his wife) and wish him well here.

Posted by Dave at 09:29 PM | Comments (1) | TrackBack

Coffee Neuroprotective?

This is interesting. Two items, just published in the medical journals, show how A2a antagonists (don't ask) protect the GABAergic neurons (neurons that release GABA). This is important because it is believed that the loss of GABA in the brain is a major cause of the decline in Huntington's Disease patients.

The first item, a study, pointed out how A2a antagonists protected neural cells and that their GABAergenic effects worked specifically in the striatum - the area of the brain hardest hit by Huntington's Disease.

The second item, a review, ties several medical studies together and makes the point that caffene, a A2a agonist may be protective in Huntington's Disease, Parkinson's Disease, stroke, and Alzheimers Disease.

If GABA loss is a key element in Huntington's Disease, this could help explain why the striatum is the hardest hit by HD.

Here are the two abstracts:

J Neurosci. 2003 Nov 26;23(34):10982-7.

Adenosinergic protection of dopaminergic and GABAergic neurons against mitochondrial inhibition through receptors located in the substantia nigra and striatum, respectively.

Alfinito PD, Wang SP, Manzino L, Rijhsinghani S, Zeevalk GD, Sonsalla PK.

Levine Neuroscience Laboratory, Department of Neurology, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, Piscataway, New Jersey 08854, USA. alfinipe@umdnj.edu

Mitochondrial dysfunction may contribute to dopaminergic (DAergic) cell death in Parkinson's disease and GABAergic cell death in Huntington's disease. In the present work, we tested whether blocking A1 receptors could enhance the damage to DAergic and GABAergic neurons caused by mitochondrial inhibition, and whether blocking A2a receptors could protect against damage in this model. Animals received an intraperitoneal injection of 8-cyclopentyl-1,3-dipropylxanthine (CPX) (A1 antagonist) or 3,7-dimethyl-1-propargylxanthine (DMPX) (A2a antagonist) 30 min before intrastriatal infusion of malonate (mitochondrial complex II inhibitor). Damage was assessed 1 week later by measuring striatal dopamine, tyrosine hydroxylase (TH), and GABA content. In mice and rats, malonate-induced depletion of striatal dopamine, TH, or GABA was potentiated by pretreatment with 1 mg/kg CPX and attenuated by pretreatment with 5 mg/kg DMPX. To determine the location of the A1 and A2a receptors mediating these effects, CPX or DMPX was infused directly into the striatum or substantia nigra of rats 30 min before intrastriatal infusion of malonate. When infused into the striatum, CPX (20 ng) potentiated, whereas DMPX (50 ng) prevented malonate-induced GABA loss, but up to 100 ng of CPX or 500 ng of DMPX did not alter malonate-induced striatal dopamine loss. Intranigral infusion of CPX (100 ng) or DMPX (500 ng), however, did exacerbate and protect, respectively, against malonate-induced striatal dopamine loss. Thus, A1 receptor blockade enhances and A2a receptor blockade protects against damage to DAergic and GABAergic neurons caused by mitochondrial inhibition. Interestingly, these effects are mediated by A1 and A2a receptors located in the substantia nigra for DAergic neurons and in the striatum for GABAergic neurons.

PMID: 14645494

Neurology. 2003 Dec 9;61(11 Suppl 6):S55-61.

Neuroprotection by caffeine and more specific A(2A) receptor antagonists in animal models of Parkinson's disease.

Schwarzschild MA, Xu K, Oztas E, Petzer JP, Castagnoli K, Castagnoli N Jr, Chen JF.

Department of Neurology (Drs. Schwarzschild, Xu, and Chen), Massachusetts General Hospital, Boston, MA.

A remarkable convergence of epidemiologic and laboratory data has raised the possibility that caffeine reduces the risk of developing Parkinson's disease (PD) by preventing the degeneration of nigrostriatal dopaminergic neurons. The authors review the evidence that caffeine and more specific antagonists of the adenosine A(2A) receptor protect dopaminergic neurons in several toxin models of PD. Other studies demonstrating protection by A(2A) receptor inactivation in animal models of stroke, Huntington's disease, and Alzheimer's disease suggest a more global role of A(2A) receptors in neuronal injury and degeneration. Although the cellular and molecular mechanisms by which A(2A) receptors contribute to neuronal death are not yet established, several intriguing possibilities have emerged. Now with preliminary clinical data substantiating the antiparkinsonian symptomatic benefit of A(2A) receptor blockade, the prospects for a complementary neuroprotective benefit have enhanced the therapeutic potential of A(2A) antagonists in PD.

PMID: 14663012

Posted by Dave at 08:52 PM | Comments (0) | TrackBack

December 10, 2003

RNAi and microRNA

1993 not only was the year that the Huntington's Disease gene was found but it was also the year that microRNA was found. It's now the key to what may lead to a cure for Huntington's Disesase - RNAi or RNA interference.

Newsweek calls this one of the top 10 health stories of the year and it has the potential of being the health story of the decade. Here's a clip from this very interesting article:

"...because microRNAs are so small and simple in structure, they can be manufactured for use as research tools. If scientists suspect that a particular gene is responsible for a disease, they can design microRNA to silence the gene in affected laboratory animals. If the disease is prevented or cured, the gene becomes a target for treatment.

RNA interference has yet to generate new medicines, but if the technique fulfills its promise, it could help us treat everything from viral infections to cancer.

...Even so, a field that was just a curiosity in 1993 is now poised to change the world—all because we invested in basic research. The scientists who discovered microRNAs were not trying to prevent AIDS, grow stem cells or treat cancer. They just wanted to figure out how something happened in a worm. "

Posted by Dave at 05:52 PM | Comments (0) | TrackBack

December 09, 2003

Growing An HD Charity

There's an excellent article in a recent USA Today. A successful entrepreneur, Greg Garrett, started a successful and growing charity to help orphans in Central America. He offers this advice for other charities:

"A multitude of business-building tactics converged to get us to this point. We had to set up ORPHAN HELPERS as a 501C3 organization, so that contributions could be tax deductible. We needed to raise money, so we organized a Blue-Jean Barbeque last year and another to be held this month.

"Currently, we are putting together an Executive Advisory Board so that we have the benefit of advice, if not hands-on assistance, from individuals, such as Bill Bright (recently deceased), Jerry Falwell, and others who have built ministries.

The power of leverage

"Underlying all of these skills is the necessity of leveraging. That means applying the 10-to-one principle, securing what you need for a tenth of the cost. This trait is invaluable when launching companies, and essential when creating a charity.

"In our early days, we needed everything: office space, Internet access, and a budget for getting the word out, to say nothing of supplies for the orphanages. Our solution was to solicit donations, largely from people and companies with whom I have worked over the years.

"A client offered an office and Internet connection; another friend provided storage space. Items for the orphanages poured in from companies and individuals. As for marketing, a printer with whom I do business donated brochures. The local cable TV on which my company advertises provided a 30-minute interview as a public service to promote our Christmas toy drive. A volunteer created our Web site; a local production company helped us put together a promotional video.

A final word

"Leverage, in other words, got the momentum going and enabled ORPHAN HELPERS to take on a life of its own. The message for entrepreneurs hoping to do the same is clear: Hold fast to your dream, but don't ignore your valuable entrepreneurial skills when turning charitable dreams into reality. Your God-given business-building savvy is the key to creating organizations that are in the business of changing lives."

Are you taking notes?

Posted by Dave at 07:01 PM | Comments (0) | TrackBack

Riluzole Study Results

HDSA Bulletin That came out today:

In the December 2003 issue of Neurology, the Huntington Study Group (HSG) published the results of a clinical trial, funded in part by the Huntington's Disease Society of America (HDSA) on a compound known as riluzole. Principal investigators Drs. Frederick J. Marshall and Merit Cudkowicz with Hongwei Zhao, John Penney, HDSA Coalition for the Cure Investigator Michael Hayden, and two HDSA Center of Excellence Directors Karl Kieburtz, and Ira Shoulson concluded that the deleterious side-effects of riluzole outweigh its limited anti-chorea benefits.

Riluzole is a compound that diminishes the glutamatergic signals sent between brain cells. Since glutamate excitotoxicity is believed to contribute to HD pathogenesis, it seemed a strong candidate for therapeutic treatment of HD. Early studies demonstrated that HD patients tolerated riluzole well and some decreases in chorea were seen. These factors prompted the HSG to conduct an 8-week placebo-controlled study to evaluate the potential therapeutic benefits of the compound for HD patients.

HSG investigators administered riluzole or a placebo at 100 mg/day or 200 mg/day in 63 HD patients in various locations around the country (including four HDSA Centers of Excellence). Treatment with the compound did reduce chorea and improved the Unified Huntington’s Disease Rating Scale (UHDRS) total motor score, though it did not improve functional capacity or other symptoms of HD. These gains were offset by elevations in ALT levels, which imply impairment of liver function. Based on these results, Dr. Marshall concluded, "The high cost of the medication, the need for ongoing monitoring of liver function, and the lack of benefit on other features of the illness prevent us from recommending the drug for routine use."

However, Dr. Marshall continued, "A larger, longer-term study of riluzole in Huntington's Disease is currently underway in Europe, and may shed light on whether the drug has the ability to slow the progression of the underlying disease."

Posted by Dave at 06:23 PM | Comments (0) | TrackBack

December 08, 2003

Blog Poll

You can go to WizBang to vote for your favorite blog.

Nope, the HD Blog wasn't nominated. There weren't any catagories for health care related blogs. Maybe next year.

Posted by Dave at 09:13 PM | Comments (0) | TrackBack

Clothes For Easy Dressing

MedPundit points to a great website for clothes that are designed for easy dressing. The website is: http://www.nursinghomeapparel.com

Posted by Dave at 08:57 PM | Comments (0) | TrackBack

And More On Pharma

Derek Lowe of the Drug Discovery blog quotes two bloggers on the state of big pharma. I especially like this one from Andrew Sullivan:

"It has been imprinted on an entire generation that Big Pharma is the source of all evil. But the only reason I'm writing this blog at all is because of Big Pharma. They're not angels in America. They're capitalists. But the profit motive has been the most progressive force in pioneering specific medical breakthroughs that we have yet found."

Posted by Dave at 08:50 PM | Comments (0) | TrackBack

Drug Research Getting More Expensive

This isn't good news. This Reuters article on Yahoo sheds some new light on the current state of drug development in this country. Here's a few key points from the article:

"...it now costs pharmaceutical companies nearly $1.7 billion to bring a new drug to market. "

"That represents a 55 percent increase over the average cost of new drugs for the five years from 1995 to 2000, according to the Bain study."

"Recent surveys have pegged the cost of bringing a new drug to market at about $800 million. But that figure did not factor in the price of failed drugs."

The Bain study further says that based on forecasts of commercial performance and the rising costs of development, marketing and defending drugs from outside challenges, new drugs may deliver only a 5 percent return on investment. That is significantly lower than the average 9 percent return from 1995-2000, according to Bain.

"Only one out of six new drug prospects will likely deliver returns above their cost of capital, the study says. "

"Only one new compound now reaches the market for every 13 discovered and placed in preclinical trials, compared to one in eight from 1995 and 2000, the study said."

"It also cited pricing pressures from insurance companies, aggressive patent challenges and shorter exclusivity periods before cheaper generics hit the market -- factors that combine to limit the total revenue potential of new drugs."

And..."But there's no question we are in a tough period for the (pharmaceutical) industry," she said."

To put all this another way...a pharmaceutical company can expect to spend $1.7 billion dollars to bring one successful drug to market and get a smaller return on that investment than if they had loaned it out for home mortages.

Posted by Dave at 08:36 PM | Comments (0) | TrackBack

Medicare Bill Becomes Law

Today, the President signed the new Medicare bill into law.

And, no...it will not cause the end of civilization nor will it solve all the problems of the health care system. For those with Huntington's Disease in their families this bill does 'some' good and for a few...it will be a significant help. Benefits phase in over the next 18 months so don't expect sudden changes.

Posted by Dave at 08:21 PM | Comments (0) | TrackBack

December 07, 2003

To Risk

Anne on the Hunt-Dis Email List posted this poem (author unknown). It seems appropriate to post it here.

To laugh is to risk appearing the fool
To weep is to risk appearing sentimental
To reach out for another is to risk involvement
To expose feelings is to risk exposing yourself

To place your ideas, your dreams before a crowd is to risk their loss
To love is to risk not being loved in return
To live is to risk dying
To hope is to risk failure

But risks must be taken
Because the great hazard in life is to risk nothing
If you risk nothing and do nothing, you dull your spirit
You may avoid suffering and sorrow
But you cannot learn, feel, change, grow, love and live

Chained by your attitude, you are a slave
You have forfeited your freedom
Only if you risk are you free!

Posted by Dave at 10:38 AM | Comments (0) | TrackBack

HD Conference

Jean Miller has announced a Huntington's Disease Conference for January 30 & 31 in Lakeland, Florida. If you can be in the area during that time this is a must-attend event. You can get all the details of this event here. Some highlights:

Guest speakers include:

2003 HDSA Person of the Year - Karen Milek
Lake Maracaibo & HSG Researcher - Dr. Juan Sanchez-Ramos
Popular Huntington's Disease Writer - Carmen Leal-Peak
Caregiver Attorney - Sean W. Scott
Caregiver Consultant - Gilda O'Brien
President, Dementia Caregiver Resources - Karen Karle, PH.D.

And of course...

Jean E. Miller - a leading advocate and invaluable resource for the Huntington's Disease Community. Adult advisor to the HDSA National Youth Alliance and creator of the Huntington's Disease Information for Families website.

As I said...a must-attend event. Reserve your spot now as there is only room for 200 attendees.

Posted by Dave at 09:54 AM | Comments (1) | TrackBack

December 06, 2003

HD Drug Works Now Online

The Huntington's Disease Drug Works (HDDW) now has their own website online. Of all the Huntington's Disease organizations, their website is one of the best looking and easiest to navigate. I definitely recommend you stop by and visit. Their website address is http://www.hddrugworks.org. If you're not familiar with HDDW...

it is an organization created to test existing medications and supplements to find those that will slow (or stop) the progression of Huntington's Disease and to determine the proper dosages. This work is supplemental to the great work that is being done by the Huntington's Study Group (HSG) and others.

This program has the very real potential of saving lives and I highly support their goals. Be sure to visit their website and learn more about this organization and how you can help.

Posted by Dave at 09:36 AM | Comments (1) | TrackBack

December 05, 2003

Almost Famous

Well...not really.

The HD Blog was referenced in a newspaper article this week, sorta. I'll explain but first some background. A few weeks ago I ranted about a Knight-Ridder article on off-label prescriptions in Newspapers Gone Bad. I started off the piece with "Sometimes newspapers are more interested in selling a story than writing an accurate article."

An editor, Tony Ortega, for a Knight-Ridder competitor saw the Newspapers Gone Bad piece and contacted me. The results were included in an article this week in The Pitch newspaper. Here's the excerpt:

"But wait a minute. Those 8,000 adverse reactions were out of 115 million off-label prescriptions last year. After the stories ran, an angry Huntington's disease researcher pointed out on his Web site what the Knight-Ridder reporters had conveniently left out: a 1 in 14,000 chance of disaster gets us into struck-by-lightning territory. In fact, patients taking off-label prescriptions were more likely to be killed in auto accidents last year than they were to be seriously harmed by their medication. And they were certainly luckier than the 100,000 people who had to be hospitalized -- and the 16,500 who ultimately died -- from complications arising from taking aspirin and other anti-inflammatory painkillers."

After I read it I went "I'm not a Huntington's Disease researcher!" and I wondered how it got included that way. Then it slowly dawned on me that in a way I am a researcher. Everyday I scour the net for new information relating to Huntington's Disease. Technically it's research. But, to be candid, it pales in comparison to the hard (and professional) work done by doctors and other professionals who spend their whole lives searching for a cure to Huntington's Disease. They're the real researchers!

Another thing struck me about the article..."angry". I'm not angry! Really...I'm a nice guy. Ok, maybe I get a little annoyed once in a while and...yeah, that Knight-Ridder article really did steam me. After all, they're arguing that a common medical practice that could save lives of HD patients should be banned! OK, OK...I'm a little angry about that!

All-in-all The Pitch article is a very good read, check it out. I'm glad that Knight-Ridder's shameful behavior was challenged. I'd be willing to forgive them if they publish a nice multi-part article on Huntington's Disease and the importance of funding the research for a cure.

Think that will happen?

Posted by Dave at 09:37 PM | Comments (0) | TrackBack

December 04, 2003

Amarin Going Bankrupt

Things don't look good for Amarin. In case you didn't know, Amarin has a potentially helpful drug (LAX-101) for Huntington's Disease in Phase-III drug trials. This drug is believed to be able to slow down the progression of HD.

Amarin has just issued a press release where they state their revenues have dropped 70% in the past year and...

"At the current time, the Company has cash sufficient to fund its operations only through the end of 2003 and with the additional funds from the sale of ADAB through the first quarter of 2004."

That means they are broke and the rest of the press release indicates they are having a fire sale ("Given Amarin's financial situation, we have expanded the scope of our asset disposal activities") on their assets in order to stay afloat.

Don't be surprised if LAX-101 is sold to another company in the near future:

"...considering the divestment of its rights in one or more of its marketed and development products in neurology, its core area of focus."

LAX-101 will survive the demise of Amarin, but this will probably delay when it comes to market. For more background on this topic read "Mixed Feelings About Amarin" from August 19th.

Posted by Dave at 07:11 PM | Comments (0) | TrackBack

Attacking The Solution

It's no secret. When a cure for Huntington's Disease comes, it'll be because a pharmaceutical company decided to risk millions of dollars to bring the cure to market. These companies will take that gamble because they believe they will ultimately make more money then they'll spend. However, there are governmental and societal forces that try to limit the profit potential.

Because of these forces, pharmaceutical companies are starting to scale back investment into AIDS cures. Steven Pollard writes about this on his blog and extensively quotes a Wall Street Journal article on this trend:

"A successful AIDS drug costs hundreds of millions to bring to market. The chances of a company recouping that kind of money are further reduced by factors other than resistance; notably, companies can no longer rely on full patent protection. Many governments around the world claim the right to override U.S.-style licensing laws, which allow the inventor a period of marketing exclusivity. And even the staunchly pro-property-rights Bush administration is likely to buy generic versions of patented HIV drugs from Canada, India or elsewhere.

...For now the hundreds of millions some big pharma companies are spending on HIV vaccine and drug research every year is economically unjustifiable and probably not sustainable."

Stephen also makes this excellent point:

"As patents and and intellectual property are weakened, so is the incentive for pharmaceutical companies to pour in the billions of dollars which they spend on research. (The average new drug costs $802 million to bring to the market). And anyone who thinks that research can or will be done elsewhere is living in la-la land. There are only two options: pharma company research or nothing."

There are also some excellent points being made in his comment section.

Huntington's Disease, compared to AIDS, is a relatively small and unknown disease. It is not in our best interest, which is finding an effective treatment or cure for HD, to encourage goverments to take steps that limit the ability of pharmaceutical companies to make money off of new research. We need to support the pharmaceutical companies in their efforts to remain profitable. No profit, no cure.

Hat tip to Andrew Sullivan on this story.

Posted by Dave at 06:44 PM | Comments (1) | TrackBack

December 03, 2003

Triacetyluridine

This is a VERY interesting Huntington's Disease study. Researchers tested triacetyluridine (PN401), a precursor drug, on a HD mouse model and found that this drug "almost completely prevented" damage to the brain cells. This was on the 3NP mouse model which I don't consider to be as good of a test as one of the transgenic mice, but it is still very promising.

They call PN401 a "pro-drug", what that means is that when the body metabolizes the drug one of the resulting chemicals is the actual drug. This is done to improve the oral availability of the drug, in this case uridine. PN401 gets 5-10 times as much uridine into the bloodstream as straight doses of uridine.

As best as I can tell, this drug is currently being in trials for use in cancer patients and for a particular mitochondrial disorder. Early results for those treatments have been very encouraging which would mean this drug could get FDA approval for those treatments years before it would get FDA approval for HD. In other words, should there be evidence that it is effective for HD patients it could possibly be prescribed "off-label" before final FDA approval.

From here it will need more animal testing before it goes into human trials. I would expect that the full FDA-approval, should this be effective, would take at least seven years. Off-label use could be available within 3-5 years (hard to say if or when this would happen). Expected cost would be $6-10/day.

I haven't been able to pin this down for certain but it appears that the pharmaceutical company Repligen has the rights to this compound (though there are lawsuits). Let's hope somebody had started doing more tests on this very interesting drug! Here's the study abstract:

Brain Res. 2003 Dec 19;994(1):44-54.

Oral uridine pro-drug PN401 decreases neurodegeneration, behavioral impairment, weight loss and mortality in the 3-nitropropionic acid mitochondrial toxin model of Huntington's disease.

Saydoff JA, Liu LS, Garcia RA, Hu Z, Li D, von Borstel RW.

Neuroscience Research, Wellstat Therapeutics Corporation, 930 Clopper Road, 20878, Gaithersburg, MD, USA

Huntington's disease (HD) is associated with decreased activity of mitochondrial succinate dehydrogenase (complex II). De novo biosynthesis of uridine nucleotides is directly coupled to the respiratory chain. Cells with impaired mitochondrial function become uridine auxotrophs and can be maintained with high micromolar concentration of uridine and pyruvate. The therapeutic role of pyrimidines and possible changes in uridine content has not been assessed in neurological diseases involving mitochondrial dysfunction in vivo. Oral administration of PN401 delivers much higher levels of uridine to the circulation than oral administration of uridine itself. Administration of complex II inhibitor 3-nitropropionic acid (3NP) induced neuronal damage in the striatum, substantia nigra and/or thalamus in 80% of the mice and led to 38% mortality. Treatment with PN401 almost completely prevented the neuronal damage due to 3NP and completely prevented mortality. In two subsequent experiments, 3NP-induced weight loss, mortality and behavioral impairment in rotarod performance and spontaneous motor activity were attenuated by treatment with oral PN401. 3NP did not reduce forebrain total uridine nucleotides (TUN), though higher doses of PN401 associated with optimal neuroprotection did elevate TUN to supranormal levels. Thus, oral PN401 treatment has neuroprotective effects in a HD model of mitochondrial dysfunction and the mechanism is more complex than correction of a pyrimidine deficit.

PMID: 14642447

Posted by Dave at 10:13 PM | Comments (1) | TrackBack

December 02, 2003

Prestwick CEO

This is some good news...

Prestwick Pharmaceuticals has appointed Dr. Christopher O'Brien as Chief Medical Officer. Prestwick, as mentioned here before, is a new company with a drug that's in Phase III trials for treating chorea in Huntington's Disease patients.

The "good news" is that Dr. O'Brien was once the Medical Director for the Denver Center of Excellence (for Huntington's Disease). This is somebody who understands Huntington's Disease and who is in a key position with a pharmaceutical company bringing an HD drug to market. Very cool. Here's the press release:

Prestwick Pharmaceuticals Announces the Appointment of Christopher O'Brien, MD as Chief Medical Officer

WASHINGTON, Dec. 2 -- Prestwick Pharmaceuticals, Inc., a CNS specialty pharmaceutical company, announced today the appointment of Christopher O'Brien, MD to the position of Chief Medical Officer. Dr. O'Brien, a Board Certified Neurologist and Fellow of the American Academy of Neurology, has been a leader in clinical research with experimental therapeutics over the past 15 years.

"We are excited to have someone of Chris' experience and capabilities join us at Prestwick," said Robert Whitehead, Prestwick's President and Chief Executive Officer. "In particular, Chris' expertise in Movement Disorders along with his experience in late phase clinical trials, make him a unique and valued addition to our team."

Prior to his work at Prestwick, Dr. O'Brien was Senior Vice President of Global Medical Affairs at Elan Pharmaceuticals. He served on both the commercial and R&D management teams, oversaw phase 3b and 4 trials along with the Medical Science Liaison team and the Medical Information Service. For the preceding 10 years, he was Vice President of the Colorado Neurological Institute and Medical Director of the Huntington's Disease and Parkinson's Disease Centers of Excellence in Colorado. Currently Adjunct Professor in the Neuroscience Department at University of California San Diego, he has held faculty appointments at the University of Colorado Health Sciences Center and at the University of Rochester School of Medicine.

Dr. O'Brien received his MD from the University of Minnesota, his Neurology training at Minnesota and fellowship training in movement disorders and neuropharmacology at the University of Rochester. He is has served as Investigator or Director for over 100 clinical trials and has more than 75 publications in the Neuroscience literature. Dr. O'Brien has served as Board member with various national foundations supporting Huntington's Disease, Parkinson's Disease, Dystonia and Tourette's Syndrome.

Prestwick has multiple late-stage product candidates for CNS disorders in clinical development. The company's lead product is tetrabenazine, a molecule that has been approved to treat Huntington's chorea in Europe, Canada, and Australia. Tetrabenazine is currently undergoing pivotal Phase III clinical testing in the U.S. and Prestwick plans to file an NDA next year.

About Prestwick Pharmaceuticals

Prestwick Pharmaceuticals, Inc. is an emerging specialty pharmaceutical company that focuses on treatments for Central Nervous System (CNS) disorders. The company was established in December 2002 and has multiple product candidates in clinical development in CNS. Prestwick plans to commercialize its lead product, tetrabenazine, in the U.S. as soon as FDA approval is obtained. For more information, visit www.prestwickpharma.com.

Posted by Dave at 08:32 PM | Comments (1) | TrackBack

December 01, 2003

Physician's Guide

If you're a caregiver and you haven't yet gotten a copy of the Physician's Guide to the Management of Huntington's Disease, you really should get yourself a copy. While you might find it a useful resource, it's invaluable for medical professionals who don't regularly work with Huntington's Disease patients.

If your loved one is in assisted-living or long-term-care, give a copy to the administrator. Same goes for any in-home assistance you may have, physical or occupational therapists, speech pathologists, general practitioners, psychiatrists, psychologists, or social workers. You'd be surprised at how many will actually read it. It makes their life easier, as well as yours.

You can either order a hard copy from HDSA (click here) or you can download a copy in PDF form from the Huntington's Society of Canada (http://www.hsc-ca.org/english/pdf/Physicians_Guide.pdf).

Posted by Dave at 08:23 PM | Comments (0) | TrackBack