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September 30, 2004
Tetrabenazine Data To Be Presented
Prestwick Pharmaceuticals is going to present their results of their Phase III trial on Tetrabenazine. It's believed that Tetrabenazine might be very helpful in the treatment of chorea (movement) in Huntington's Disease patients.
The press release:
Pivotal Phase III Data of Tetrabenazine for the Treatment of Chorea Associated with Huntington's Disease to Be Presented at American Neurological Association Annual Meeting
WASHINGTON- Sept. 30, 2004
Additional Long-Term Safety and Efficacy Data for Investigational Therapy to Be Presented
Prestwick Pharmaceuticals, Inc., a CNS specialty pharmaceutical company, announced today that lead investigators from the Huntington Study Group will present results from a pivotal Phase III trial of tetrabenazine for the treatment of chorea associated with Huntington's Disease (HD) during a satellite symposium held in conjunction with the American Neurological Association 129th annual meeting in Toronto, Ontario, October 2-6.
Chorea can be a debilitating feature of a number of neurological diseases, most notably HD. The condition is characterized by excessive, involuntary and repetitive movements, which may involve the face, limbs or the entire body. There is no approved treatment for chorea associated with HD in the United States.
Tetrabenazine is a first-of-its-kind, dopamine depletor currently available in some European markets and Australia as XENAZINE(TM), and in Canada as NITOMAN(R) for the treatment of hyperkinetic movement disorders. Although currently an investigational drug in the U.S., tetrabenazine has demonstrated a profound effect on chorea, with 80 percent of patients having marked to good improvement. Side effects can include drowsiness, insomnia, akathisia, and depression. In countries where approved for use, tetrabenazine is considered by neurologists as first-line treatment for chorea.
Tetrabenazine study results to be presented at the 18th Annual Symposia on Etiology, Pathogenesis, and Treatment of Parkinson's Disease and Other Movement Disorders at the ANA meeting include:
-- A Randomized, Double-blind, Placebo-controlled Study of Tetrabenazine in Patients with Huntington's Disease: presented by Frederick J. Marshall, MD, on Sunday, October 3 from 2:30 p.m. to 2:45 p.m. in the Grand West Ballroom at the Sheraton Centre Toronto Hotel
-- Safety and Efficacy of Tetrabenazine for the Treatment of Huntington's Disease and Other Choreas: presented by Joseph Jankovic, MD, on Sunday, October 3 from 12 p.m. to 1:30 p.m. in the Grand West Ballroom of the Sheraton Centre Toronto Hotel
Approximately 30,000 Americans suffer from HD, and 150,000 are at immediate risk for developing the disease, according to the Huntington Study Group of the University of Rochester, NY.
Prestwick anticipates filing a New Drug Application (NDA) for Tetrabenazine with the U.S. Food and Drug Administration (FDA) in the near future for the treatment of chorea associated with Huntington's Disease. The NDA filing will be supported, in large part, by data from the Phase III data presented at the movement disorders symposium. The company was granted fast track and orphan drug status by the FDA.
ABOUT THE SYMPOSIA
Conducted in association with the ANA, the 18th Annual Symposia on Etiology, Pathogenesis, and Treatment of Parkinson's Disease and Other Movement Disorders is organized by the Parkinson Study Group, Huntington Study Group, Dystonia Study Group, Myoclonus Study Group, Tourette's Syndrome Study Group, Cooperative Ataxia Group and the Movement Disorder Society. All abstracts presented at the peer-reviewed, full-day program have been published in the September issue of Movement Disorders.
About the Huntington Study Group
The study "A Randomized, Double-blind, Placebo-controlled Study of Tetrabenazine in Patients with Huntington's Disease", called "TETRA-HD", was organized and conducted by the Huntington Study Group (HSG), a non-profit, cooperative group of Huntington's disease experts from medical centers in North America, Europe and Australia who are dedicated to improving treatment for persons affected by Huntington's disease. For more information, call the HSG at 800-487-7671, or visit their web sites at www.Huntington-Study-Group.org and www.HuntingtonProject.org.
ABOUT PRESTWICK PHARMACEUTICALS
Prestwick Pharmaceuticals, Inc. is an emerging specialty pharmaceutical company that focuses on treatments for CNS disorders. The company has multiple product candidates in clinical development for Huntington's Disease, Parkinson's Disease, and schizophrenia.
Posted by Dave at 11:39 AM | Comments (0) | TrackBack
September 29, 2004
Amarin - Definitely Under Better Management
Amarin has announced that they have reached a settlement with Valeant.
Earlier this year, and in a financial bind, Amarin sold a chunk of their assets to Valeant. There was a subsequent disagreement which is now resolved. The end result is that Amarin improved their financial situation. They were on the hook for a potential $8 million worth of payments, instead they paid $2 million now. This will help Amarin when it comes time for them to arrange more financing.
The press release:
LONDON, September 29 - Amarin Corporation plc (NASDAQSC: AMRN) today announced that it has signed a settlement agreement with Valeant Pharmaceuticals International (Valeant) (NYSE: VRX - News) resolving an outstanding dispute relating to the sale of Amarin Pharmaceuticals Inc ("API") in February 2004.
As previously announced on February 26, 2004, Amarin completed the sale of API and a majority of its U.S. products to Valeant and upon closing API became a wholly owned subsidiary of Valeant. As reported in Amarin's report on Form 20-F for the year ended December 31, 2003, the asset purchase agreement for this transaction provided for a purchase price adjustment based on variations between a pro forma balance sheet agreed between the parties and a closing date balance sheet to be prepared after the closing. Subsequent to the closing of the sale, a dispute arose relating to adjustments to the closing date balance sheet.
Under the main terms of the settlement agreement and in consideration of the mutual release of such claims, Amarin and Valeant have agreed to amend the asset purchase agreement to waive $6 million of the $8 million in contingent milestones due to Amarin from Valeant. The remaining $2 million is now no longer contingent and is payable by Valeant to Amarin on November 30, 2004. In addition, Amarin's contingent obligation to repurchase $414,000 of wholesale inventory has been waived by Valeant.
The settlement agreement is conditional upon consent to such amendment to the asset purchase agreement being given by Elan Corporation plc (or its assignees) on or before October 7, 2004. Of the $2 million payable to Amarin by Valeant on November 30, 2004, $1 million is payable to Elan as part of the original settlement between Elan and Amarin on February 25, 2004.
Rick Stewart, Chief Executive Officer of Amarin commented, "We are pleased that this dispute has been resolved amicably and that our good collaborative relationship with Valeant remains intact. The resolution of this dispute removes this uncertainty for the company and our shareholders."
About Amarin Corporation
Amarin Corporation plc is a neuroscience company focused on the development and commercialisation of novel drugs for the treatment of central nervous system disorders. Miraxion is in phase III development for Huntington's disease and is in phase II development for treatment unresponsive depression.
For press releases and other corporate information, visit our website at http://www.amarincorp.com.
Statements in this press release that are not historical facts are forward-looking statements that involve risks and uncertainties which may cause the Company's actual results in future periods to be materially different from any performance suggested herein. Such risks and uncertainties include, without limitation, the uncertainty of entering into and consummating a definitive agreement on terms acceptable to the parties, the inherent uncertainty of pharmaceutical research, product development and commercialization, the impact of competitive products and patents, as well as other risks and uncertainties detailed from time to time in periodic reports. For more information, please refer to Amarin Corporation's Annual Report for 2003 on Form 20-F and its Form 6-Ks as filed with the U.S. Securities and Exchange Commission. The company assumes no obligation to update information on its expectations.
Posted by Dave at 11:25 AM | Comments (0) | TrackBack
September 28, 2004
Amarin Approves Purchase Of Laxdale Ltd.
It's interesting to note that in this latest press release from Amarin that Miraxion appears to not only be helpful for the treatment of Huntington's Disease, it might also be helpful for the treatment of depression.
Here's the press release:
Amarin Shareholders Approve Acquisition of Laxdale Limited
Tuesday September 28, 10:10 am ET
Amarin Receives Shareholder Approval to Purchase Laxdale Limited
Receives Authorization to Proceed With Private Offering of Shares
LONDON, September 28 Amarin Corporation plc today announced that the resolutions, as set out in Amarin's Form 6-K dated September 1st 2004, to approve the acquisition of Laxdale Limited and to authorize the equity financing, have been passed at an Extraordinary General Meeting of its shareholders held earlier today.
Rick Stewart, Chief Executive Officer of Amarin commented, "we are pleased to have received overwhelming shareholder backing for the Laxdale acquisition and the proposed equity financing and we would hope to report shortly on our progress on these and other matters".
Amarin is a neuroscience company focused on the development and commercialization of novel drugs for the treatment of neurological disorders affecting the central nervous system. Amarin's leading pipeline product, Miraxion, is in development for a number of therapeutic indications including Huntington's disease ("HD") and treatment-unresponsive depression. Amarin is listed on the Nasdaq small cap market (ticker: AMRN), has headquarters in London and a research and development facility in Stirling, Scotland.
Corporate Strategy
Amarin's goal is to capitalize on its strong reputation in neuroscience and to become a leader in the development and commercialization of novel drugs which address unmet medical needs. Amarin will develop its late-stage development pipeline initially focusing on HD and depression. Amarin will directly commercialize its neurology products in the U.S. and out-license or partner its product rights in Europe and Japan. Amarin will also out-license or partner its pipeline globally for indications outside neurology.
Miraxion(TM) and Huntington's Disease
Miraxion(TM), Amarin's lead late-stage development product, is being developed for the treatment of Huntington's disease, with phase III trials due to commence in early 2005. Miraxion for Huntington's disease has been granted Fast Track designation and received Orphan Drug designation both in the U.S. and in Europe. Huntington's disease is a genetic neurodegenerative disease characterized by movement disorder, dementia and psychiatric disturbance. It has been diagnosed in approximately 30,000 patients in the U.S. with a similar number in Europe. Additionally, over 200,000 persons in the U.S. alone are genetically "at risk" of developing the disease. Onset of symptoms is typically between 30-50 years of age with a typical life expectancy from diagnosis of 10-25 years. Patients with late stage disease require continuous nursing care, often in nursing homes, with an estimated annual cost to the U.S. economy of up to $2.5 billion. Presently, there is no effective treatment or cure for Huntington's disease.
Miraxion and Treatment-Unresponsive Depression
Phase II clinical trials have been conducted with Miraxion in treatment-unresponsive depression that concluded with statistical significance that a 1-gram per day dose of Miraxion was effective in treating depression in patients who remained depressed, despite receiving standard therapy. The results of two trials were published in the Archives of General Psychiatry in October 2002 and the American Journal of Psychiatry in March 2002.
As a result of these encouraging clinical trial results, Amarin intends to further evaluate the clinical benefits of Miraxion in this indication and will seek a development and marketing partner to accelerate the program.
About Amarin Corporation
Amarin Corporation plc is a neuroscience company focused on the development and commercialisation of novel drugs for the treatment of central nervous system disorders. Amarin's late-stage development product for Huntington's disease is in phase III clinical trials.
For press releases and other corporate information, visit our website at http://www.amarincorp.com.
Statements in this press release that are not historical facts are forward-looking statements that involve risks and uncertainties which may cause the Company's actual results in future periods to be materially different from any performance suggested herein. Such risks and uncertainties include, without limitation, the uncertainty of entering into and consummating a definitive agreement on terms acceptable to the parties, the inherent uncertainty of pharmaceutical research, product development and commercialization, the impact of competitive products and patents, as well as other risks and uncertainties detailed from time to time in periodic reports. For more information, please refer to Amarin Corporation's Annual Report for 2003 on Form 20-F and its Form 6-Ks as filed with the U.S. Securities and Exchange Commission. The company assumes no obligation to update information on its expectations.
Posted by Dave at 11:18 AM | Comments (0) | TrackBack
September 27, 2004
Online Huntington's Disease Videos
Stanford's Hopes website (a great site for those looking for information on Huntington's Disease) has posted videos you can watch online.
There you watch and learn about the basics of Huntington's Disease. What a great idea! You can view them here.
Posted by Dave at 11:11 AM | Comments (0) | TrackBack
September 26, 2004
HDDW Update
HD Lighthouse has an update you can read here on the latest with HDDW. They now have 24 people enrolled with another 12 close to being enrolled.
You can visit HDDW's website here.
Posted by Dave at 11:06 AM | Comments (0) | TrackBack
September 25, 2004
Lawn Mower Racers Still Raising Money For HD
I caught this nice article on the Mikula's - the family that has raised money for Huntington's Disease by putting on a Lawn Mower Race. I wrote about them last year and I'm glad to see they did again this year. Here's an excerpt from the article:
Keech and Mikula travel the national circuit, which takes them to eight to 12 races each year in Alabama, Ohio, Illinois, Wisconsin, Tennessee and Missouri. They follow the Michigan Lawn Mower Racing Association, too.
The two also are on the Sparta fair board, and they organized a race this summer at the Sparta airport during Town & Country Days and donated proceeds to help fight Huntington's Disease.
Posted by Dave at 10:56 AM | Comments (0) | TrackBack
September 24, 2004
HD Research Company Teams with ImClone
Neurome, Inc. has entered into a partnership with ImClone Systems - the giant biotech company. Neurome is researching treatments for neurological diseases such as Huntington's Disease.
Here's the press release:
Neurome Announces Partnership With ImClone Systems
Thursday September 23, 10:30 am ET
LA JOLLA, Calif., Sept. 23 Neurome, Inc., a privately held biotechnology company, announced today that it has entered into a research agreement with ImClone Systems Incorporated (Nasdaq: IMCL - News), in which Neurome will apply its proprietary technologies and expertise in quantitative neuropathology to assist ImClone Systems in the discovery stage investigation of preclinical candidate molecules. Specific financial terms were not disclosed.
The partnership will leverage Neurome's extensive experience in Central Nervous System (CNS) diseases and proprietary technologies (the Neurome Technologies) to provide ImClone Systems with information on the effects of selected preclinical molecules on potential targets in the Central Nervous System.
"We are very pleased to establish a collaboration with ImClone Systems," said Floyd E. Bloom, M.D., Chairman and Founding Chief Executive Officer of Neurome and Chairman of the Department of Neuropharmacology at The Scripps Research Institute. "We believe ImClone Systems' decision to work with Neurome is an important validation of our discovery stage capabilities and proprietary technologies."
Warren Young, Ph.D., President and Chief Technology Officer of Neurome added, "ImClone Systems is a leader in the molecular oncology field, and is now clearly established and positioned to commercialize important human therapeutics. The potential benefits of combining Neurome's proprietary technologies and expertise with ImClone Systems' novel candidates are very exciting."
"ImClone Systems is dedicated to developing and commercializing novel oncology products and these efforts invariably begin with research," said Peter Bohlen, Ph.D., Senior Vice President, Research, of ImClone Systems. "We expect that our work with Neurome will help expedite our efforts in developing certain of our pre-clinical research programs and look forward to a successful collaboration."
About Neurome
Neurome, Inc. is a discovery stage biotechnology company that seeks therapeutic solutions to human neurodegenerative diseases. The company is focusing its efforts on Alzheimer's disease, Parkinson's disease, Huntington's disease, and Amyotrophic Lateral Sclerosis -- neurodegenerative disorders which are currently untreatable and share a number of characteristics which make them particularly amenable to Neurome's expertise and technologies. Since its founding in 2000, the company has developed and optimized proprietary technologies to reveal and quantify gene expression patterns and the resultant morphological details of brain structures in normal and pathological brains with an unprecedented level of sensitivity, specificity and resolution. These unique technologies to measure and assess, at the molecular, cellular and macroscopic levels, neurodegenerative processes at work, are ideally suited to identify the earliest evidence of pathology in animal models of human diseases of the CNS, and to evaluate the comparative effectiveness of candidates for intervention. The company is using these technologies to discover and develop drugs that provide effective treatments for diseases characterized by neurodegeneration. For more information, please visit Neurome's website at www.neurome.com.
Except for historical statements, this press release contains forward-looking statements involving significant risks and uncertainties, and a number of factors, both foreseen and unforeseen, could cause actual results to differ materially from Neurome's current expectations. Forward-looking statements include those which express a plan, belief, expectation, estimation, anticipation, intent, contingency, future development or similar expression. Readers are cautioned that forward-looking statements are not guarantees of future performance and that undue reliance should not be placed on such statements. Forward-looking statements speak only as of the dates on which they were made. Neurome undertakes no obligation to publicly update or revise any forward-looking statements or to make any other forward-looking statements, whether as a result of new information, future events or otherwise unless required to do so by the securities laws.
Posted by Dave at 10:49 AM | Comments (0) | TrackBack
September 23, 2004
Man Charged With Hitting HD Patient
From the Milwaukee Journal-Sentinel:
A caregiver at Community Living Group Homes in Greendale faces a felony charge in Milwaukee County Circuit Court for allegedly abusing a resident who suffers from a rare, crippling nervous-system disorder.
According to a criminal complaint filed by the state attorney general's office, Thomas F. Wittig, 50, of the 300 block of Tyrell Court, did not provide adequate care to a woman suffering from the brain disease Huntington's chorea, who he knew was injured June 9. The complaint charging Wittig with abuse says the woman told investigators she had accidentally set off an alarm while looking for her dog when Wittig found her, "angrily escorted her to her room," cursed her and hit her in the face.
A medical examiner diagnosed the woman's facial bruise and black eye as likely resulting from being punched, according to the complaint.
If convicted, Wittig faces a maximum prison sentence of six years and a fine of up to $10,000. He is scheduled to make his initial appearance in court today.
Posted by Dave at 10:40 AM | Comments (0) | TrackBack
September 22, 2004
Omega-3's
It's believed that taking fish oil is one of the best things a person with Huntington's disease can do to maintain their health. This belief is backed up the success in trials of purified EPA (LAX-101/Miraxion) against HD.
The ingredients in fish oil that appear to be so beneficial is the 'Omega-3' fatty acids - DHA & EPA. Now there's a study showing the benefits of DHA in protecting against Alzheimers.
Results published in the September 2, 2004, issue of Neuron revealed that when the omega-3 polyunsaturated fatty acid docosahexaenoic acid (DHA) was eliminated from the diet, the level of DHA in the brains of the transgenic animals was decreased compared to normal mice. Examination of brain tissue under the microscope showed a comparative increase in damage to the dendrites of the experimental animals. In behavioral studies the transgenic mice on low-DHA diets showed profound performance deficits in learning and remembering the location of hidden, submerged platforms in a tank called the Morris water maze. None of these negative effects were seen when the mice were maintained on a diet supplemented with DHA.
Posted by Dave at 10:32 AM | Comments (0) | TrackBack
September 21, 2004
Pat Hanley -RIP
Famed New Zealand painter Pat Hanly has passed away due to Huntington's Disease. From a news article:
"He made a huge contribution to New Zealand art. He had a passion for both painting and printmaking, and has been a wonderful teacher to many people."
Hanly was considered one of New Zealand's leading modernist painters and printmakers, as well as a feisty and outspoken activist. The New Zealand Who's Who lists his hobbies as "Kite-flying, sailing, Greenpeace".
He travelled to Europe for various residencies in the late 1950s, and absorbed influences such as Picasso and Chagall.
He returned to New Zealand in 1962 and settled in Auckland, becoming a part-time lecturer at the university's school of architecture. His work is held in all the major public galleries in the country.
He is survived by his wife, photographer Gil Tavernor and three children.
Posted by Dave at 08:16 AM | Comments (0) | TrackBack
September 20, 2004
Some Comments Not Showing
A hangover from making changes to stop the comment spammers...
Some (non-spam) comments are not showing at the moment. They have not been deleted. They will show up again once I've identified the problem in the code.
Posted by Dave at 11:38 AM | Comments (0) | TrackBack
September 19, 2004
Tijuana Frauds
It's been a year since I wrote on it, but our community is still be being robbed by the Tijuana conartists that promise cures for Huntington's Disease.
"Live Cell Therapy", whether from (supposedly) a shark or some other animal seems to be the most popular and dangerous scam.
Here's a good article (Part 1, Part 2)on the Tijuana scams from the San Diego Union-Tribune. Here the link and some excerpts:
Live cell
What it is: A therapy that involves injecting into patients living tissue from animal organs, embryos or fetuses.
What’s claimed: Material from the healthy organs, tissue or fetuses of sheep, cows and other animals repair human cellular damage and heal failing organs by stimulating the body’s healing process.
What’s known: There is no evidence that cell therapy is effective in treating cancer or other diseases. Serious side effects can result.
And more...
Yet health-fraud experts and mainstream doctors say the clinics offer little more than a pseudoscientific twist on faith healing, providing ineffective and risky treatments to patients who sometimes deplete their savings and mortgage their homes to pay for them.
Even some staunch supporters of alternative medicine and patient choice are suspicious of Tijuana's offerings.
“The words ‘buyer beware’ should be engraved on a sign over the border,” said Ralph Moss, editor of The Moss Reports, a U.S. publication that reviews promising alternative treatments throughout the world.
Posted by Dave at 10:05 PM | Comments (0) | TrackBack
Oops
I received a very nice note from Dr. LaVonne Goodman regarding her guest editorial last week and my comments on her editorial.
It appears I read her articles out of order. When I wrote my comments I misstated what she had to say. After I've had a chance to reread both items, I'll post revised comments. Until that time, so that my error does not cause any misunderstandings I've moved my original comments off-line.
Posted by Dave at 09:09 PM | Comments (0) | TrackBack
September 18, 2004
HD Article
The Waynesboro Record Herald has a nice article on a young lady dealing with Juvenile Huntington's Disease. Check it out here. The excerpt:
Dianne is especially grateful for all the help the family received while Lora was a student at the high school.
"They adapted her schedule and assignments so she was able to graduate in 2000. We got so much help in finding out what was wrong with her."
When she was in ninth grade, Lora began to volunteer at the high school library during her lunch periods. She can still be found there Monday and Friday afternoons, filing cards in the card catalog, sorting books and working on the computer.
"She's such a help to us, and when the students see her - with her restrictions - they realize she's not allowing her disability to keep her from making a contribution," noted librarian Diane Strock.
"Lora's not staying home and feeling sorry for herself. She's helping us out and maintaining contact with her former teachers," Strock added.
Posted by Dave at 11:43 AM | Comments (1) | TrackBack
September 17, 2004
"As If" - Part II Posted
HDAC.org has posted the second part of the wonderfully written "As If" article. Be sure to check it out. Here's an excerpt:
...I held my emotions in tight until my sister went to bed in the room we were supposed to be sharing. Only my clothing and other belongings slept in that room with her, that night and all those before. Declaring the living room sofa more comfortable and better for my back, I did my sleeping out there because I did not want to share a room, did not want to be with my sister. All the feelings and observations I had experienced on this vacation, came flooding back as I sat alone in the darkness on the deck overlooking the beautiful lake. I went inside periodically, inside where there was light and laughter, a lively card game tournament going on between the others of our ‘party’. Wiping my tears first and composing myself, I would grab another beer from the refrigerator and then retreat to the darkness outside. ...
Posted by Dave at 11:36 PM | Comments (0) | TrackBack
September 16, 2004
Tetrabenazine Gets 'Fast Track'
From the press release (more on Tetrabenazine here):
Tetrabenazine Receives ``Fast Track'' Designation From the FDA for Chorea Associated with Huntington's Disease
WASHINGTON--(BUSINESS WIRE)--Sept. 16, 2004--Prestwick Pharmaceuticals, Inc., a CNS specialty pharmaceutical company, announced today that tetrabenazine has been designated as a "fast track" product by the U.S. Food and Drug Administration (FDA). Also, tetrabenazine has been designated as an orphan product by the FDA. Tetrabenazine is being evaluated for the treatment of chorea associated with Huntington's disease. Currently in pivotal clinical testing in the United States, tetrabenazine is a novel dopamine depletor that works by selectively blocking the VMAT2 transporter in the CNS.
The Fast Track Program is designed to expedite the review of drug compounds for the treatment of patients with serious or life-threatening diseases where there is an unmet medical need for new therapeutic approaches. The benefits of fast track designation provide for multiple meetings, timely comments, and a priority review at the FDA.
"This treatment addresses an unmet medical need, as there are currently no approved drugs for the treatment of chorea in Huntington's disease. The recent FDA action underscores the need for therapeutics for people with Huntington's Chorea and is most encouraging," said Kathleen Clarence-Smith, MD, PhD, Acting Chief Executive Officer, Prestwick Pharmaceuticals. "Prestwick is engaged in multiple programs to study the efficacy and safety of tetrabenazine in this patient population. We look forward to compiling the data generated from these trials and submitting it to the FDA."
Tetrabenazine is approved for use in several European countries and Australia as Xenazine(TM), and in Canada as Nitoman(TM).
About Prestwick Pharmaceuticals
Prestwick Pharmaceuticals, Inc. is an emerging specialty pharmaceutical company that focuses on treatments for CNS disorders. The company has multiple product candidates in clinical development for Huntington's Chorea, Parkinson's disease, and schizophrenia. Prestwick is currently conducting pivotal trials in the U.S. with its lead compound, tetrabenazine, and plans to file an NDA in the very near future.
Posted by Dave at 08:28 AM | Comments (0) | TrackBack
September 15, 2004
First Human Testing For RNAi
Not for Huntington's Disease, but for Macular Degeneration. To me it is amazing how fast research is moving on using RNAi as a therapeutic tool.
I've said it before and I'll say it again...RNAi will probably become one of the biggest medical stories of the last several decades. It offers the biggest hope for to be a truly effective Huntington's Disease effective treatment/'cure' in the near future. Just one of many diseases that may end up being treated with this method.
Oh...Sirna Therapeutics, which is working with the University of Iowa on a treatment for Huntington's Disease, is also applying to the FDA for approval to use RNAi in the treatment of Macular Degeneration. An excerpt from this very interesting article:
Backers, though, say that RNAi appears to be more potent than the earlier techniques because it makes use of the cell's natural mechanism.
"There's no doubt in my mind that this is the clear winner," said Mark A. Kay, a Stanford professor. He hopes to test an RNAi treatment for hepatitis C in cooperation with Benitec, an Australian company that now owns a company he founded.
Some animal tests have demonstrated the technique's potential. According to a paper published in June, scientists at the F.D.A. led by Suzanne L. Epstein used RNAi to partly protect mice from lethal flu viruses, including two strains of avian flu that experts worry could become the basis for a new pandemic.
Beverly L. Davidson and colleagues at the University of Iowa reduced the severity in mice of one type of ataxia, a hereditary brain disease somewhat similar to Huntington's. "It's very exciting,'' she said, "because we finally have a tool to approach therapies" for diseases like Huntington's and ataxia.
Posted by Dave at 11:53 PM | Comments (0) | TrackBack
September 14, 2004
Hurricanes & HD
A little mention of Huntington's Disease in this article about helping victims of a recent hurricane in Florida.
One man brought his family, his wife and two daughters, into town pulling a trailer with an ATV. The 12-year-old was suffering from Huntington's Disease, a painful, terminal condition that gradually deteriorates the neurological system. A tree was crushing the roof of the family's house, causing it to sag more and more. Their only request was that someone help get the tree off their house and help put a tarp up over it.
Posted by Dave at 11:44 PM | Comments (0) | TrackBack
September 13, 2004
French Huntington's Website
If you speek French (or even if you don't) check out this French website on Huntington's Disease - http://huntington.free.fr.
The creator, Phil Coty, has the same issues in his country as our community has in other countries - getting the word out about Huntington's disease. Here's what he wrote me:
It is filled with two kind of informations: some gathered and written by me and other simply translated from English into French so that the French speaking community can access those documents.
The main purpose of this site, at this stage, is not to focus on a specific scientific topic, but to show that a worldwide community exists around HD and that this community is working hard, a fact that most of the people here do not really know precisely (I mean ordinary people who must face HD not the scientists involved in research).
I owe Phil an email back. He states his English isn't very good, but I disagree. Of course, I've been accused of mangling the English language so...
Thanks for your work Phil!
Posted by Dave at 11:05 PM | Comments (1) | TrackBack
Everest
Two brothers are planning to become the first American brothers to scale Mt Everest together. Why do such a dangerous thing?
To raise money for Huntington's Disease research!
Sounds a bit crazy to me, but they have my full support. If you're going to be in or around Chicago on October 10th you can meet them at Belly's. (More info here.)
They hope to raise $100,000 for the Hereditary Disease Foundation (HDF). You can donate online here.
Hat tip to Gerard for emailing me about this adventure!
Posted by Dave at 06:50 PM | Comments (0) | TrackBack
September 12, 2004
Guest Editorial On Hereditary Disease Foundation
This was sent in by Dr. LaVonne Goodman of the Hereditary Disease Foundation. (Read my comments here.)
THOUGHTS ON CLINICAL TRIALS IN HUNTINGTON’S
A CORRECTION
I was wrong and wish to correct a statement in my recent Hereditary Disease Foundation update written for this site (Ed. - Reference is to the HDDW website). I said that the Huntington Study Group (HSG) had “outlawed” clinical trial situations other than the placebo-controlled trial. The correct statement is that they support “controlled” trials which is later defined (clinical trial section) as placebo-controlled (phase III) trials. I believe it is fair to say that they are not considering any other type of clinical trial. But my descriptive phrase “outlawed” was my frustrated exaggeration.
WHY FRUSTRATED?
I’m frustrated because the Hereditary Disease Foundation conference underscored just how remarkably wide the gap is between extraordinary science and anything useful for HD people. Research has identified a multitude of molecular targets and scores of drug candidates. And more come on each list every week.
But so far, there has not been a single treatment identified. That’s really why I’m frustrated.
THE CLINICAL TRIAL SITUATION:
The only HD clinical trials approaching success for HD are being done by drug companies: Prestwick is seeking FDA approval for Tetrabenazine and Amarin for Miraxion. These clinical trials situations are delivering.
However, the Huntington Study Group (HSG) trials aren’t working as well. Despite its extensive network (over 250 clinical researchers and 70 academic centers), no efficacy trials for people are even started. They are in the planning stages.
So far HSG trials have shown that creatine and minocycline are safe for HD people in the short term. Because the short term safety profiles of these drugs were established decades ago, from the HD patient perspective we have learned no more than we knew five years ago: Creatine and minocycline help the mouse; and are safe in people, at least for the short-term.
I am being hard on HSG because their clinical trial system is so slow: They are great at research, but they are slow in getting this great research to people through their clinical trial system. I mean no disrespect to these scientists: But I think it is fair to say that there is something terribly inefficient about this system that has more clinical researchers and more drug candidates, than HD people in therapeutic clinical trials.
HSG ALTERNATIVE?
I may be “burned at the stake” for saying it, but from the HD patient-advocate perspective, HSG’s clinical trial system isn’t working. Perhaps it can be fixed; perhaps it will get fired up. But meanwhile this generation waits.
Should we consider another approach to the HD clinical trial? One that could be utilized (in addition to the HSG academic clinical trial) for those candidate drugs that have no pharmaceutical company sponsor?
HERETIC SUGGESTION
Might it be time to create a non-profit professional HD Clinical Trial Company, (advised by HD scientists and patient advocates) whose full-time and only job is to run efficient HD clinical trials? HSG academic clinicians are smart people, and should continue with HSG trials. But because they have a multitude of other responsibilities: clinical practice, research, teaching, clinical trials are often not top priority.
Isn’t it a good time for a system whose only priority is clinical trials in HD?
Time could be saved in a system based on a clinical trial “company” that took on the work of clinical trials for HD full-time. Further, such a company could be required to report clinical trial results more efficiently. It isn’t in the best interest of HD people to depend solely on the HSG system that can take two years between trial completion and reporting of trial results (as occurred in the HSG minocycline safety trial).
Money could be saved by a private clinical trial company because all money spent would go directly for support of clinical trials. Academic institutions take 50% or more of grant money for “institutional” overhead, so only 50% granted money actually goes to the clinical trial.
Time and money could be saved by a clinical trial company that combined safety and efficacy phases of clinical trials; as has been proposed by the FDA. Time and money would be saved in the Institutional Review Board (IRB) approval process. IRB approval must be done before any and every clinical trial with people. Academic multi-center trials require separate IRB approvals from each participating institution for the same trial. Take a guess at how long that process takes. A private clinical trial company needs only one institutional review board approval. A single approval could include several agents.
ALTERNATIVE?
Imagine a professional HD clinical trial company: One that would do clinical trials for HD full-time, and one that could form a “joint venture” with “for profit” drug companies. Many pharmaceutical companies are unwilling to support HD clinical trials, but would likely be willing to pursue FDA approval if such trials were done “for” them. In such situations, there would be pre-negotiated profit sharing for positive outcomes. Any such profit acquired would be returned to the company for the support of further clinical trials.
Of course, there is no perfect clinical trial or clinical trial system. But might this (or similar) model be a good addition to the HD clinical trial situation?
Posted by Dave at 09:33 AM | Comments (0) | TrackBack
September 11, 2004
I'd Forgotten - 9/11
At some time over the last three years I forgot 9/11.
It wasn't all at once, it's been little bits & pieces spread throughout the last three years. By yesterday my memory was little more than a flash of two planes hitting tall buildings. Oh, and tomorrow would be the third anniversary.
Then I watched this web presentation (7mb file) and the memories and images came flooding back.
I'd forgotten the people covered in ash.
I'd forgotten about people passing out pictures in hopes of finding their wife/husband/child.
I'd forgotten about the individuals who chose to rush up the staircases as thousands came flooding down.
I'd forgotten the men in suits and women in dresses jumping to certain death.
I'd forgotten about the chaplain.
I'd forgotten all too much.
If you have a broadband connection (DSL/Cable/etc) take a few minutes to watch this presentation.
You'll be reminded of the strength of the human spirit.
You'll be reminded of what can be accomplished when people work together.
You'll be reminded that there are heroes around us.
You'll be reminded of what a true hero is.
You'll be reminded of all the love and caring there is this world.
...and you'll be reminded of just how precious our lives are to others.
To the many readers from outside of our country...
If you'd like to know a little more about America, this web presentation will tell you more than most books about our spirit and resiliency. Thank you for all your kind words and support in the months that followed this horrible event.
While we lose far more people to Huntington's Disease every year than the 3,025 that were lost that fateful day, a cure for Huntington's Disease will happen before there is a cure for what caused 9/11.
Posted by Dave at 11:00 AM | Comments (0) | TrackBack
September 10, 2004
Bringing A Drug To Market
Derek Lowe has another interesting post on his "Drug Discovery" blog entitled "How It Really Works". In it he discusses how the research comes together for putting a new drug on the market and NIH's role in the whole process. For those wondering why it takes so long to bring a new drug to market this'll give you a better understanding.
Some excerpts from the article:
The regulatory filing for an Investigational New Drug needs to be seen to be appreciated. It's nothing compared to the final filing (NDA) for approval to market (we're still years and years away from that at this point), but it's substantial. The clinical trials start, cautiously, in normal volunteers at low doses, just to see if the blood levels of the compound are what we think, and to make sure that there's no crazy effect that only shows up in humans. Then we move up in dose, bit by bit, hoping that nothing really bad happens. If we make it through that, then it's time to spend some real time and money in Phase II.
Sick patients now take the drug, in small groups at first, then larger ones. Designing a study like this is not easy, because you want to be damn sure that you're going to be able to answer the question you set out to. (And you'd better be asking the right question, too!) Rounding up the patients isn't trivial, either - at the moment, for example, there are not enough breast cancer patients in the entire country to fill out all the clinical trials for the cancer drugs in development to treat it. Phase II goes on for years.
If we make it through that, then we go on to Phase III: much, much larger trials under much more real-world conditions (different kinds of patients who may be undergoing other therapy, etc.) The amount of money spent here outclasses everything that came before. You can lose a few years here and never feel them go by - the money that you're spending, though, you can feel. And then, finally, there's regulatory approval and its truckload of paperwork and months/years of further wrangling and waiting. The NIH does not assist us here, either.
Read the whole thing here and be sure to browse through the website.
Posted by Dave at 11:52 PM | Comments (0) | TrackBack
September 09, 2004
Memantine
I'd like to see this study. Memantine might be an useful treatment for Huntington's Disease. Currently it is prescribed for Alzheimer's Disease.
J Neural Transm Suppl. 2004;(68):117-22.
The N-methyl-D-aspartate antagonist memantine retards progression of Huntington's disease.
Beister A, Kraus P, Kuhn W, Dose M, Weindl A, Gerlach M.
District Hospital, Taufkirchen/Vils, Germany.
According to the excitotoxicity hypothesis, neurotoxicity due to glutamate is regarded as potential factor in the progredient neurodegeneration of Huntington's disease (HD). Memantine, as a glutamate receptor antagonist, should counteract this mechanism. Its effectiveness (up to 30 mg/day) with regard to retardation of progression was thus examined in 27 HD patients in a two year, open and multicentre trial. The results suggest that memantine treatment of HD may be useful in terms of retardation of the progression of the disorder.
PMID: 15354397
Posted by Dave at 11:32 PM | Comments (0) | TrackBack
September 08, 2004
NZ Gets HD House
Not only is their country beautiful and their Sauvignon Blanc wines incredible, New Zealand is big when it comes to Huntington's Disease. Not only does a lot of important Huntington's Disease research come out of that country, they also appear to have a strong HD community.
This press release from the New Zealand government concerning the 'Amaryllis House' further adds to their growing reputation:
Amaryllis House a first for New Zealand
New Zealand's first residential care facility for people with Huntington's Disease has opened.
New Zealand's first purpose-built residential facility for people with Huntington's Disease, was opened in Lower Hutt by Associate Health and Disability Issues Minister Ruth Dyson today.
Amaryllis House, a $1.4 million development involving Healthcare New Zealand and the Huntington's Disease Association, will provide around the clock residential services, funded by the Ministry of Health, for up to 14 people. The service will include two rooms for respite care.
"Amaryllis House is the product of great collaboration involving government and non-government agencies," Ruth Dyson said.
"This is a first for New Zealand and a first for the one in 15,000 New Zealanders who have Huntington's Disease.
"We have needed a dedicated residential care service for people with Huntington's for some time. Historically, people with Huntington's have been placed in psychiatric facilities, or supported for physical disability in community care, or in aged care facilities, when their needs were often multiple.
"Because of the nature of the condition, it is important that the service can support residents at any stage of the disease. This facility offers both on-site care when it is needed, but more importantly it gives residents the freedom to live as independently as they feel comfortable," Ruth Dyson said.
A temporary service for residents has already been operational since last year, and the staff and exisitng residents will now be based in the new facility opened today.
Posted by Dave at 11:50 PM | Comments (0) | TrackBack
September 07, 2004
The Spam Battle Continues
A little bit of a break from the HD front...
This last weekend this website got hit with 100's of spam comments. These are fake comments generated by a computer program to create links to websites. This is done by unethical websites to raise their rankings in the search engines.
The sheer volume required a considerable amount of my time and, as a result, I've had to rewrite some code to this website to make it more difficult for these automated programs to post their links to pron (intentionally misspelled as that word hurts web rankings), casino, & drug websites.
This is a temporary fix and I'll be doing some more work over the next month on this website. Much of the work has been long overdue (more than a year).
So...excuse the dust as we go through our remodeling!
Posted by Dave at 11:15 PM | Comments (2) | TrackBack
September 06, 2004
Bill Frist's Speech - All Health Care
Text of Bill Frist's Republican convention speech.
Ten years ago, on my first day as a Senator, my dad, a family doctor in Tennessee for 50 years, paid me a visit.
As we sat in my new office, he said: "Son, the nameplate on your door reads William Frist.
Always remember you're a doctor. You're committed to healing and helping people.
It really should read, William Frist M.D."
Well, today the nameplate on the door of my Capitol office reads just that William Frist M.D. It's a constant reminder of my dad's advice: to work each day to better the life of every individual American.
And that, my friends, is what President George W. Bush has done -- particularly when it comes to health care.
He has won some huge victories to make health care cost less and be there when you need it.
So, let's talk about what that means for Americans, and what health care in America can become.
Health care is the lifeblood of our future, and it touches every life -- our grandparents, our parents, our children, you.
And when you need it, you want it to be reliable.
You want it to be affordable and lifelong.
You want it to reflect the dignity and the value of those you love. And you want it to be the best.
Let me remind you: in 2000 before someone borrowed his line George Bush promised that "help is on the way."
Tonight, America can take comfort that help is here.
Today, unlike when my dad practiced, the most powerful tools in American medicine are prescription drugs.
These medicines help so many get out of bed, pick up their grandchild, walk to the store, and find joy in each day.
Yet these miracle medicines were denied by Medicare.
Well, George Bush has righted that wrong!
Thanks to his leadership, over 40 million seniors and individuals with disabilities will soon have access to prescription drugs.
What's more, prescription drug coverage is the centerpiece of something bigger: the first real reform of Medicare since its creation.
Among the improvements we made are new screenings for heart disease, diabetes and cancer -- a first ever "Welcome to Medicare" physical exam.
And right now, thanks to the President's action, this Medicare prescription drug discount card is providing 4 million seniors with immediate relief from the high cost of their medicines.
Now some of our opponents don't want seniors to get this card.
They don't want seniors to know that our Party cut the cost of their medicines.
They'd rather play politics than help patients.
Don't listen to them! You can get your card today. And it's simple. Just call 1-800-MEDICARE. Tell 'em you want your card. Tell 'em Dr. Frist prescribed it.
And let me point out that our opponents talked about doing this for eight years.
While seniors suffered they talked and talked and talked.
George Bush and the Republican Congress delivered. We acted.
Not just talk action.
This victory for our Party -- and above all for seniors -- is part of a larger battle we're fighting on behalf of every American.
How we do so is crucial.
Our opponents have a way of confusing compassion with dependency.
We believe true compassion encourages and empowers Americans to be responsible and take control of their own lives.
That's what President Bush and the Republican Congress did when we made Health Savings Accounts HSAs -- the law of the land.
With an HSA you can invest tax-free in a personal savings account.
You can roll it over year to year or withdraw funds if you get sick without paying a penny of tax.
YOU own it. YOU invest it.
YOU grow it. YOU control it.
It is YOURS.
So here's the choice: do we grow the bureaucracy and gouge you with higher taxes, as Mr. Kerry will do?
Or, do we let the American people grow their own HSAs and own their health care, as George Bush wants to do?
We've made our choice.
But I'll tell you what Senator Kerry's prescription will be: take a handful of tax increases and don't call me in the morning.
President Bush wouldn't stop with HSAs. Health insurance costs too much. People need help.
President Bush is working for tax credits of up to $1,000 for individuals, and $3,000 for families, to help the uninsured purchase their own health insurance.
And as for small businesses, they're burdened, often crushed, by health care costs.
So, we want to help them band together to provide affordable health care for their employees and their families.
Another reason health care costs too much is our abused medical liability system.
The culprits are personal injury trial lawyers.
We oppose these predators.
We must stop them from twisting American medicine into a litigation lottery where they hit the jackpot and every patient ends up paying.
Let me share with you a story.
Two years ago, on a family vacation in Florida, I came across a horrendous car accident as my sons and I drove along Alligator Alley.
The accident had just happened.
I rushed forward as any doctor would do -- to help four people thrown from their car and two people trapped inside. Tragically, three children died.
But their parents who were critically injured and another relative -- did survive.
The next morning, I went to the hospital to check on the family.The two trauma surgeons who had cared for them pulled me aside. They said, "Dr. Frist, we may have to leave this hospital, maybe the state, maybe even what we love to do. We just can't afford our liability insurance. And it keeps going up."
Today I checked in with the hospital's Chief of Staff Dr. Callari. He said the situation has worsened. Though he has never been sued, his liability insurance has doubled.
He couldn't afford it and had to drop it.
Dr. Callari's father and grandfather were both physicians.
But he doesn't want his 11 and 12 year old boys to go into medicine. Because everything he has worked for -- his savings, his family, his livelihood -- is now at risk.
And so are the people of southern Florida. That hospital has the only Level 1 Trauma Center in the region. What if it closes?
This is unacceptable.
Because in medicine, seconds often mean the difference between life and death.
Let's be clear: you can no longer be both pro-patient and pro-trial lawyer.
John Kerry has made his choice.
He put a trial lawyer on his ticket.
By his votes and by his actions, he is the "Dr. No" of tort reform in America.
President Bush is fighting this good fight.
And in the Senate, where reform has been blocked, we will fight too. We will come back again and again and again until doctors, patients, and the American people win.
Before I close, I'd like to touch briefly on stem cell research.
Scientists work on two basic types of stem cell research.
One is adult -- with cells taken, for example, from bone marrow or cartilage. Another uses cells taken from human embryos.
Adult stem cell research has already led to cures. And both fields hold promise.
But, contrary to the claims of some, embryonic stem cell research is still at a very early stage.
John Kerry claims that the President has put a "sweeping ban" on stem cell research.
I challenge Mr. Kerry tonight: what ban? Shame on you, Mr. Kerry.
Under the President's policy, the federal government is funding both types of stem cell research at record levels. And the private sector remains free to fund and pursue any type of stem cell research.
The President has also said that we should conduct this research with the highest moral and ethical standards.
An embryo is biologically human. It deserves moral respect.
This President will not use your taxpayer dollars to destroy human life or create human embryos solely for the purpose of experimentation.
My friends, I'm so proud of our President's record. He's making health care more affordable, more accessible.
He's uniting ownership and opportunity for millions. And he is looking to the future.
He has a vision to harness America's awesome potential: through the power of our technologies, the strength of our sciences, the efficiency of our enterprises, and the highest aspirations of our people.
Prescription drugs in Medicare, tax-free Health Savings Accounts, an ethical framework for scientific discovery: these will be part of our future.
Tax credits for the uninsured, electronic medical records, a just, fair and fast medical liability system: these could be part of our future. But, only one candidate will lead us there President George W. Bush.
We have a choice. John Kerry's trillion dollar government-run plan will place your health in the hands of others faraway.
President Bush's plan is patient-centered which is the only, sure prescription for superior care.
Mr. Kerry will empower those who tax you. President Bush will empower those who cure you.
John Kerry remains the personal injury lawyers' best friend. George Bush will put the interests of patients, doctors and nurses first.
Fellow citizens, on November 2nd, there is only one choice for a stronger, healthier and freer America -- George W. Bush.
Posted by Dave at 08:26 PM | Comments (0) | TrackBack
September 05, 2004
Republican Convention - Continued
Ok, ok...this isn't exactly instant coverage. I know...while voting is eight weeks away, there are only 'three' undecided voters in America. Which means that nothing that is covered hear is likely to affect the election. Some might say that is a good thing. Though I understand the bidding for the final three available voters is up to a set of Samsonite Luggate and a year's supply of air freshener.
Seriously though, here' is what was said about health care and medical research through the rest of the Republican convention (not counting the President's speech):
Laura Bush - Not much is said. She mentioned the new prescription drug coverage in Medicare. She also blurs the issues on stem cell research by saying that her "husband is the first President to provide federal funding for stem cell research." That's not true. He was the first to provide funding for embryonic stem cell research, but there had been federal funding for stem cell research for several years before Bush.
Bill Frist - Now we are talking. The Senate's leading doctor... the whole frickin' speech is on health care. I'll post the whole speech
Elisabeth Hasselback - Talks extensively on breast cancer treatment and research.
Sam Brownback - Primarily discusses the increased spending on HIV/AIDS and related diseases. This is touted as Bush has greatly increases spending in these areas.
Michael Reagan - He was brought on because Ron Reagan spoke at the Democratic convention. A couple of 'sort-of' references but his speech was primarily about his father - Ronald Reagan.
Lurita Doan - Mention to Bush committed to making health care affordable for small business owners and their employees.
Rob Portman - a very slight reference to lowering health care costs.
That's all. I'll post First's speech separately and what Bush had to say seperately also.
Posted by Dave at 11:08 PM | Comments (0) | TrackBack
September 04, 2004
HD Campers
Every once in a while a newspaper "hits one out of the park" when they write an article on Huntington's Disease. This article is one of those and the topic is the "Circle of Friends" Huntington's Disease Camp.
Here are some excerpts:
The "Circle of Friends" Huntington's Disease Camp has been sponsored annually for the past 15 years by the Michigan Chapter of the Huntington's Disease Association of America. ...
The regional camp brings together campers, mostly from Michigan, Ohio, Indiana and Illinois, and provides an opportunity for a week to step outside that knowledge and commune with nature, make new friends and renew old friendships, play team sports, sing songs, eat fun food and just generally do the camp thing in a safe and non-stressful environment, Blatt said.
"I love it here," breathed Angela Ssengova, a 39-year-old Ann Arbor resident who said she was diagnosed with the disease four years ago. "It's fun. The food's great and there are so many things to do. You can play softball and volleyball and the hayrides are great - we even saw some wild geese. And the music; we got to play African drums last night." ...
"Their physical condition, their balance and movement improve significantly while they are here," Blatt said. "They have to walk. If they don't, they fall more and their balance goes."
Physical improvements are obvious: One of Staffeld's teammates was unable to walk without the aid of a walker when he arrived at camp two days earlier, Blatt said. This day, that same man was waiting his turn at kickball, standing on his own and eventually connecting with the ball, to his apparent delight."
"Our campers thrive on challenges," Blatt said.
The campers always gain at least two pounds - an important part of the program because Huntington's patients, whose constant movement often requires that they take in at least 3,000 calories just to maintain, may lose weight as the disease progresses.
The socialization and activities at the camp restore something of their former lives to the campers, said Kelly McKintyre-Lott, a nursing student who is volunteering time at the camp for a second year. "We're giving them back what they feel they've lost," she said.
Dave Lewis, a medical student also on the camp's junior staff said, "Every one of these campers had a life before they had Huntington's. They had jobs, occupations. They were engineers, bank presidents, teachers. They have families. Some have children. Many had no way to know it was in the family."
Posted by Dave at 11:29 PM | Comments (0) | TrackBack
September 03, 2004
Larry Gatlin
One of these days the local HDSA chapter is going to have to straighten out their mailing list. Until then I can rely on the local paper to tell me what's going on with the chapter.
Looks like we have another celebrity to thank for supporting Huntington's Disease - Larry Gatlin. Here's the snippet:
DOINGS: Grammy Award-winner Larry Gatlin will be the lead entertainer at the Celebration of Hope, the sixth annual fund-raiser for the Huntington's Disease Society of America, beginning at 6 p.m. Wednesday in the Seawell Ballroom at the Denver Performing Arts Complex. Distinguished Leadership Awards for outstanding community service will be presented to Wendy Aiello, Aimee Sporer Caplis and Dan Caplis, Douglas Kerbs and Kroenke Sports Enterprises. News 4's Ed Greene will emcee, and TV legal analyst Norm Early will be the auctioneer. Info: www.blacktie-colorado.com/rsvp, code COH, or call 303-947-5209.
Posted by Dave at 05:35 AM | Comments (0) | TrackBack
September 02, 2004
Lamps for HD
The ideas for raising money for Huntington's Disease are endless. What makes some ideas more successful than others is the passion of those involved. We've seen lawnmower racing and now we have another unique idea...
Lamps
Yep, they make lamps for HD and so far they've raised over $270,000! Here's some excerpts from an article on this wonderful couple in New Zealand:
The Clintons arrived in Marlborough earlier this year after a three-year stint in Moscow, where Mr Clinton was a maintenance officer at the New Zealand embassy.
While there, the pair came up with the idea of making the flamboyantly shaped lamps and spent some time coming up with designs.
They describe the lamps as "mood lighting" which creates a soft ambience in which people can wind down in.
All sorts of materials are incorporated in the shades, including sheets of music, tassels, leopard prints, thick furs, and coloured fish skins.
They said the name of their business - Lampworks, Art That Shines - reflected the idea that the shades were works of art which had been created with care.
The Clintons plan to launch the enterprise officially on September 13 with a display at The Millennium Art Gallery and hope to sell the lighting around New Zealand.
Posted by Dave at 09:01 PM | Comments (0) | TrackBack
September 01, 2004
Living Cell Technologies
From the news article:
BIOTECH company Living Cell Technologies roared on to the Australian Stock Exchange yesterday 25 per cent above its issue price.
The company is headquartered in Adelaide and raised $6.36 million from investors for more testing of its diabetes, Huntington's disease and haemophilia treatments.
It is developing three products - NeurotrophinCell to treat Huntington's disease, Fac8Cell for haemophilia and DiabeCell for diabetes.
The products use encapsulated cells that are transplanted into the patient and work by replacing and performing the functions of diseased or damaged organs.
Posted by Dave at 05:57 PM | Comments (2) | TrackBack