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August 17, 2005
German Scientists Urge Against Forced Testing
In Germany, forcible gene tests made the headlines after a young teacher was refused employment two years ago for failing to undergo a test of her genes. When school authorities learned that the applicant had a family record of Huntington's disease, a hereditary disease that affects the human nervous system, they wanted to find out whether she could also develop the illness. A court ruled in the woman's favor. ...The recommendations made by the Ethics Council Tuesday, however, don't affect other areas of public life -- including possible gene screening by insurance companies. In this area, German companies have voluntarily imposed a moratorium banning such testing of insurance applicants until 2011. But the experts on the Ethics Council believe that strong regulations will then be needed more urgently than ever.
Posted by Dave at 10:24 AM | Comments (0) | TrackBack
August 09, 2005
A Rough Week For Bloggers
First I heard 'Venemous Kate', who once helped out this site, busted up her face in an accident. Then I heard about another who broke some ribs. But this story, unfortunately, tops them both...
Chris Muir, the blogosphere's (only?) cartoonist, has a sister dealing with a nasty cancer. And they can use your help:
You can visit Cathy's website here.
Posted by Dave at 07:22 PM | Comments (0) | TrackBack
A Wedding, The Past, The Present, The Future
I took my wife to the airport this morning... my new wife.
That's right, I got married a couple of weeks ago and I couldn't be happier. While on my honeymoon I had some time to think about this blog and the role that the Huntington's Disease community has in my life. Strangely enough, that ties into my wedding, but I'll get to that in a little bit.
First, let me fill you in on some on some events that I didn't report from earlier this year. This last spring I left a message for a local Huntington's group regarding an upcoming fundraiser. In the past couple of years I've supported the organization with my money & my time. It's a great group which is very supportive of the community and a wonderful collection of volunteers.
My call to them was to offer my services, along with my (then) fiance and daughter, to help with the fundraiser. As expected, one of the key members of this group called me back a couple of days later. What I didn't expect was the ensuing conversation...to say I was 'floored' would be an understatement.
(Warning: Some key elements of this story are missing. This is done to protect the privacy of others, not myself. So if some of this doesn't make 'sense', my apologies.)
The person who called me back is one of the hardest working members in our community. (She puts in an amazing amount of time & energy for the cause of HD. She truly deserves more recognition than she currently receives for all her hard work. Our community is lucky to have her.) I was very surprised when she declined my offer for help. I was more suprised when she questioned my motives for helping out with the event and for participating in the group.
After we finished our conversation and I hung up the phone, my emotions ran the gamut from anger to sadness to hurt to confusion to concern. In sorting out what had happened, I spoke with several people who knew me and were knowledgeable about my involvement with Huntington's Disease. I informed them of what happened, what I was feeling, and I asked if they saw any truth in her statement. With great relief on my part, all the feedback I got back was incredibly supportive of my involvement in the Huntington's Disease community. My fiance, even though my involvement in HD took away time and energy from her, was especially supportive.
So what was this person's concern about my motives? Well,
After I had taken some time to reflect on what she had said and on the feedback of my family & friends, I sat down and wrote out an email to this person. In the email I tried to articulate why I wanted to help the HD community despite having no familial connection to it. I must not have been very persuasive as I never received a response back. I considered writing here about the event at the time, but I felt my emotions were still a bit too raw to do that well.
So why write about it now? What does this have to do with my recent wedding? And...why AM I involved in the HD community when I have no familial connection?
Well, this is where my wedding comes into the story. (I told you I'd get back to that part!) In preparing for the wedding, the minister had us come up with a reading from the Bible. Unlike the process of choosing music, selecting the passage to be read was easy for us - 1 Corinthians 13. I've long had a special attachment to that verse (since I was a child). I even have an excerpt (purchased from Avon of all places) of it on a wall my house. My wife also had a special attachment to that verse.
Now, just about anybody who has attended a few weddings has heard this passage. It may be the most common one used in weddings. It's also one of the most misunderstood passages due to how it translates from the original Greek into English. While the subject of the chapter is 'love', the message is not referring to 'romantic' love. The passage is actually referring to giving selflessly to others.
I've tried to pattern my life on this philosphy (to varying degrees of success and failure) and I've found that I've always been happiest when I've focused on helping others. My mother lived by this philosphy (and it is almost certainly where I first got it). Right before she died, she received an award as 'Volunteer of the Year' for the entire state of Montana. As part of this, she was in the running for National Volunteer of the Year. (I never did learn who nominated her for the award.)
Now, our wedding isn't based on volunteering! We chose that passage because we believe that our marriage will survive and prosper if we continue to give selflessly to each other (as opposed to treating each other selfishly).
As for volunteering, before I became involved in the Huntington's Disease community, I donated a considerable amount of time to various non-profit organizations. Before my life got super-busy, I was averaging about 30 hours a week of volunteering. The time I put in was generally fulfilling but Huntington's Disease struck a special chord with me. In learning about Huntington's Disease, I found this great need for information, both by the public and the HD community. The public often doesn't know this devastating disease exists and members of the HD community often have a hard time finding the information they need. For both the HD community and the public at large there is not enough told about the successes in HD research and how it affects all of us.
And that is why I started this blog. To help spread the word. And since the HD Blog started over two years ago, I've gotten a number of private emails letting me know that I have made a difference in somebody's life. Along with the satisfaction of knowing that I've helped some people, I've also felt guilty about the periods that I have not posted regularly or with content that wasn't as useful. Writing a blog is easy when there is plenty of free time, however...maintaining it is tough when schedules get tight and life's distractions are prevalent.
So, today, my wife is out of town for meeting with her new job...my new daughter is in Mexico building a house for the very-poor... and I'll soon start preparing for a dance event I'm photographing next week. I'm using this free moment to write to you.
As for the future? I've been contemplating that question since my wedding. I plan to continue posting and maintaining the HD Blog as there is still that need in the community. I've missed not being as actively involved and I want to do what little I can to help. Since that conversation a few months ago several friends have pointed out to me a number of people in the HD community who were never at risk for the disease but still provide valuable support through their volunteer efforts. I'll try to do what I can to help.
As for that phone conversation I mentioned? There is still some hurt but I know there was no animosity intended. Her conversation with me was based on addressing something that worried her and the organization she is a part of is continuing to do absolutely great work for the HD community.
I'm sure I'll run into her next month at the biennial Movement Symposium in Denver as most of the active HD community will be there. I'll be attending so that I can report back on the latest news in Huntington's Disease research for those who can't make it and I'm sure she'll be there putting in a lot of tough hours helping out (as always). Hopefully things will go well.
My final comment as I close...If you have some spare time in your life, find ways to donate it to the Huntington's Disease community. There are so many needs and not enough volunteers. You'll find it will be time well spent.
Posted by Dave at 11:13 AM | Comments (0) | TrackBack