June 30, 2003
2003 HDSA Convention
Dr. Lynn Miller has an article at the Huntington Disease Advocacy Center website. on the 2003 HDSA Convention This is what she took away from the event...
End of life care: "…substantial gaps exist in addressing end-of-life and palliative care in persons with HD. Persons with HD have essentially fallen through the cracks of an existing healthcare system in the United States."
Social Security Disability: "I suggested to a committee member that we need to have the Social Security disability regulations changed so that HD has its own criteria since right now the criteria for organic brain disease are being substituted inappropriately." This is so true! I'll have a future post on this subject.
When does HD begin?: "Doctors and researchers are finally listening to HD families when we tell them that cognitive and psychological symptoms start long before the classical neurological symptoms used to diagnose onset." This is so true! I've seen evidence 20 years before the 'official' diagnosis of HD. This is important as it affects when disability benefits begin. More on this in a future post.
Protein Aggregates: "Inhibiting them from forming in people with early stage HD might be a good thing because it might address the toxicity of the mutant protein. " This reference is understated. It's only been in the last 9-12 months that they've been able to determine that protein aggregates (ameloids) are the cause (not a side-effect) of early cell death. Knowing this allows researchers to develop more targeted strategies for attacking HD. It's hard to overstate the importance of this knowledge.
LAX-101: "The good results in the area of movement..." It isn't going to be approved to 2005, at the earliest. We know it's well tolerated so if you wish to get the benefits of LAX-101 now just make sure you're taking enough fish oil to get 2grams of EPA a day. It's not that expensive and it looks to be a great investment in maintaining your health.
CoQ10: "...suggest that maybe the CoQ10 doses should have been higher." This is true for many supplements. If you take Coq10, and the evidence is that it would be a good idea, you should take at least 600mg's a day. The maximum benefit might come from as much as 1200mg's a day. Unfortunately, this is an expensive supplement.
Tetrabenazine: She calls for more research on this medication.
Read the article for much more information.
Posted by Dave at 08:19 PM | Comments (0) | TrackBack
Thanks Venomous Kate
Welcome to those of you visiting this us from Venomous Kate's Blog!
I'm sure many of you do not know what Huntington's Disease is. HD is a genetic disease where every child of an HD parent has a 50% chance of getting the HD gene. There is no cure or effective treatment at this time.
HD causes a gradual deterioration of the brain. If you combined Alzheimer's and Parkinson's into one disease and added some behavioral degeneration you would have an approximation of HD. The symptoms usually start to show between age 35-45 and take 10-20 years to run their course. The suicide rate in HD is 8-12 times that of the general population. It's not pretty.
While this disease is as common as Lou Gerig's Disease (ALS) and Muscular Distrophy (MD) it's not as well known. Researchers have made the most of the limited money and are developing many possible therapies which could end up benefiting Alzheimers, Parkinson's, Lou Gerig's, Mad Cow and many others. Research that was done for HD was a valuable part of the human genome project.
Effective treatments and a cure is on the way, but it will take a few years. This blog is an attempt to follow this exciting research!
Thanks for visiting the HD Blog and thank you Kate for your generousity!
Posted by Dave at 02:05 PM | Comments (0) | TrackBack
Longevity Genes
Not a lot new here but Science Blog has this article about longevity genes. According to the article they've identfed about 200 genes that affect longevity.
Here's the money quote:
"Earlier this year, Kenyon's lab showed in C. elegans that the damage-repairing chaperone proteins not only increase lifespan, but also delay the onset of protein-aggregation diseases similar to Huntington's diseases."
One of the more promising areas of HD research has been in areas related to 'chaparone proteins'. I do believe we'll see a fairly effective treatment come out of this research in the next few years. The big question mark is if there will be any noticed increases in cancer due to the systemic delaying of cell death (apoptosis). (Generally speaking, it would still be a risk worth taking.)
Posted by Dave at 01:25 PM | Comments (0) | TrackBack
June 29, 2003
HD Blog FAQ's
What is a 'blog'?
A blog, short for 'weblog', is a website that contains a log of messages. HD Blog will focus on news that relates to Huntington's Disease research. When possible, the information will be linked with commentary. This is a community, so feel free to add your comments.
Can I suggest a link?
Please do! If you found something interesting it might be of interest to others.
You haven't returned my email, are you rude or did I offend you?
No! I receive hundreds of personal, business and blog related emails. If I answered all my emails I wouldn't have time to update this blog. Also, I own a business that takes quite a bit of my time.
Who is this Dave at the bottom of the messages?
My name is Dave Bowdish and I live in Colorado.
How do I reach you?
You can email me at: Dave-at-Huntingtons-dot-info
Are you an Expert?
Nope, not even close. I'm not a medical expert, legal expert or financial expert. Always consult a qualified expert before acting on anything you read here or anywhere else.
Is the HD Blog associated with any particular HD organization?
No. Though this blog supports many HD organizations, it is independent.
Do you have Huntington's Disease?
No. Huntington's Disease does not run in my family. I became involved in HD when I became close friends with a family that was hit hard (aren’t they all?) by the disease. I'm now involved in two HD support groups and I support the local HDSA chapter office.
Why did you start this blog?
When I first started researching HD, like many I had a difficult time finding current information. Especially information that was 'understandable' to the layman. The more I read, the more excited I became about the rapid advances in research.
Eventually I was emailing the information (with translations) to friends and family. As my email list got longer, it became apparent that there is a real thirst for information in the HD community. The HD Blog is a way to distribute this information, along with some hope and support, to a broader audience.
How is this site funded?
Right now all the expenses are paid by "Starving Geeks", a technology consulting company. In the future we will be accepting contributions online to help cover the costs of this website and other expenses such as the purchase of reports and medical journals.
If you'd like to contribute now you can send a check to:
Centennial Business Services LLC
PO Box 371257
Denver, CO 80237
Make the check payable to "Centennial Business Services" and mention it is for the HD Blog. Thanks in advance.
Is there hope?
Yes, there's hope! For ten years we've been hearing that a cure is "right around the corner". As it turns out, it wasn't. However, the progress in research is now starting to accelerate. Why the recent acceleration? Because, as Huntington’s Disease becomes better understood, the research is better targeted. Which, in turn, further increases the knowledge of HD.
So are you then saying a cure is "right around the corner"?
Even if it is who would believe it now?
Seriously though, they are now identifying drugs and supplements that slow the progression of the disease. Nobody can predict the future but I expect to see drugs (that are already approved for other uses) that significantly slow HD progression by the end of 2005. I expect to see approved treatments that are very effective against HD by 2007-2008 and I believe we'll see a 'cure' or equivalent approved by 2008 to 2010. A cure or effective treatment could come sooner, but I believe these are realistic estimates.
It's important for anybody who has Huntington's, or is at risk, to do every thing they can to stay as healthy as possible so that they can get the maximum benefit from the coming treatments (and cure).
What can I do to “stay as healthy as possible”?
The best resource is HD Lighthouse’s HDL Triad.
If all this information is too intimidating, here is a good rule of thumb to follow:
”If they say it is good for your heart (exercise, diet, anti-oxidants, etc.), it’s probably good for HD.”
Posted by Dave at 09:54 PM | TrackBack
Doing The Right Thing The Wrong Way
Medpundit has it right. The House and Senate "almost had the guts to act responsibly".
A senior drug benefit plan was passed last week and some Senator's attempted to limit the drug benefits for wealthy medicare recipients. Ted Kennedy threatened a filibuster and the amendment failed.
Why is this important? Medicare and Social Security costs are expected to skyrocket in the coming decades as our population gets older. The plan that passed will make this problem worse. Eventually, benefits will have to be cut and taxes will have to be raised to cover these costs. This will especially hurt those who need the aid the most.
What many people don't realize is that seniors, as a group, are the wealthiest group in the country. This is because they've had a lifetime to build their wealth. Ultimately, the bulk of the cost of the wealthy senior's medications will be paid by younger, less-affluent taxpayers. They should have only extended the drug benefits to those seniors who have difficulty paying for the costs of their medications.
Update: American RealPolitik has a great Ramirez cartoon and a great Varvel cartoon on this subject.
Posted by Dave at 08:48 AM | Comments (0) | TrackBack
June 28, 2003
Email Information
If you would like to email me comments or suggestions I can be reached at:
Dave-at-Huntingtons-dot-Info
Please don't be upset if you don't get a response from me. Between personal emails, business emails, and blog emails I get hundreds of messages. Its just not practical to respond to all of them.
So if you don't hear from me I'm not being 'stuck up', I'm just trying to keep the 'Blog Life' from overtaking my personal and business life.
Thanks for understanding!
Posted by Dave at 10:12 AM
June 27, 2003
Running For Ramona
"Then, finally, it hit me, the only way I could really help her other than being there for her was to help find a cure for this thing..."
Why can't there be more stories in the newspaper like this one in the San Diego Union-Tribune? Not only is this a great article on Huntington's. It's a great story about love. Bill & Ramona Johnston, former high school sweethearts.
"But it really shows when this comes, and I get diagnosed and since Day One he couldn't be sweeter – kind, gentle, loving. You hope you're married to that kind of guy. You hope that, but you don't really know."
He a PR guy for the San Diego Chargers and she's the pHD raising two teenagers. They're also raising money, lots of it, for HD research.
"Then you get away from it and start looking at it – I just did that, and we raised $64,000 just for doing that. There's nothing else I could do by myself to raise that kind of money."
Do yourself a favor and read the article.
Posted by Dave at 09:11 PM | Comments (1) | TrackBack
June 26, 2003
Prestwick Snags $15 Million
Prestwick Pharmaceuticals announced that they've secured $15 million in financing. In their press release was this little tidbit:
"Prestwick has several product candidates in clinical development. Its lead product is Xenazine, a molecule that has been approved to treat Huntington's chorea in Europe, Canada, and Australia, but has not yet been approved in the U.S. Xenazine's effectiveness in chorea has been shown in multiple published clinical studies, and there is currently no approved therapeutic product in the U.S. for this indication. Xenazine is undergoing pivotal Phase III clinical testing in the U.S., and the company hopes to file an NDA in the near future. " Read the full Press Release here.
Xenazine is not a 'cure', it is used to calm down movement (chorea). It looks like it has some significant side effects and, should it be approved, may not be suitable for everybody. If approved, we could see it in the US within a year or two.
Posted by Dave at 10:42 PM | Comments (0) | TrackBack
Welcome!
HD Blog is the first weblog dedicated to the topic of Huntington's Disease. In fact, it is one of the first weblogs dedicated to following a single disease.
We'll be following the research on HD and offering a layperson's analysis of ongoing events. Hopefully you'll find this weblog to be informative and useful. We'll be offering regular updates so be sure to check in from time to time.