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June 26, 2004

Blogiversary

Yep! The HD Blog is celebrating it's blogiversary today. It's hard to believe that it has been one year since we opened up. We are one of the first medical blogs to focus on one specific disease - Huntington's Disease.

We never expected to receive Instapundit traffic or be the recipient of an Instalanche, but the goal has been to provide up-to-date news on matters that affect those in the Huntington's Disease community.

I especially wanted to bring some hope with this website. Last year I saw that there was a lot of good news in the research community but so few in our community seemed to know about it and I wanted to do my part in changing that.

At times it's been hard. My schedule last fall went crazy and there was less time to spend on the blog. I've kept up the posting schedule but I've slacked on updates to the code, design, and links. My schedule also prevented me from attending wonderful symposium in Florida, the HDSA convention in St. Louis, and the HDDW kickoff meeting in California. I've also had days, just like everybody else in our community, where it gets to be overwhelming.

Then there were the deaths in our community. Too many to mention of course, but two in particular hit hard: Jerry Lampson from cancer and Lou Wilkinson from a Canadian health system failure.

Other deaths, tragic as they were, brought something to our community. Reagan's death turned, at least for a while, the national discussion on health care away from cost cutting to medical research. Bert Eymberts was memorialized in a bronze statue showing that those with the HD gene can save lives and make a difference in this world. Rev Ivy Ayris and the Rev Norman Gunn left over $400,000 to be used in the Australian Huntington's community.

But this was also a year that brought much hope!

There was the incredible news about 'curing' SCA1 in animals. The difference between SCA1 and Huntington's is very slight, the polyglutamine string is just in a different location. The same treatment can be targeted to the HD's polyglutamine string. This was just one of many advances in RNAi.

On other fronts...

UC Irvine found the protein, SUMO-1, that makes mutated huntingtin protein toxic. This discovery provides a new and, more importantly, a single target for researchers to attack in the search for an effective treatment.

HDDW, through much hard work and determination, is now delivering promising treatments to those in new, innovative drug trials around the country.

Nancy Wexler and a whole host of researchers came out with a huge HD study, again from Lake Maracaibo in Venezuala on the role of environmental factors in affecting Huntington's Disease.

In one of the most under-covered and important health stories in the last year...NIH restructured changed their focus in a way that will speed up research for diseases such as Huntington's.

A small and imperfect study showed amazing results from Creatine.

Recent research has found promise in Pyruvate, CoQ10, fish oil/EPA, trehalose, cysteamine, ursodiol, & minocycline as treatments that may slow the progression of Huntington's Disease.

I'm looking forward to this coming year as there is expected to be many exciting developments in the world of Huntington's Disease research. This blog will be reporting them as they are announced along with other related news. There is hope!

Posted by Dave at June 26, 2004 08:19 AM

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Posted by: Inge&Gerard at June 26, 2004 09:58 AM

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