Vj and I attended the national Huntington convention this week-end. The convention was held in Raleigh NC and was well attended .I would encourage anyone with HD or those living with HD to attend a national or state HD convention . The range of subjects discussed is very broad and the speakers are all top flight. We were very surprise by the number of young folk who were in attendance, they are part of the National Youth Alliance (NYA) . They will be the future of the National HD movement. I am amazed to hear the stories of the families with HD and the Issue of who has been test and the other who either will not be tested or are in denial. I guess i only need to look at VJ's siblings.I left with quite a bit of research to do and I hope to start on that in the next few days. Remember the Name CHDI they will be big players in the race to cure HD.
The past week at the hospital was interesting , the visit to Washington was productive. The HUD folks were well prepared as was our team not withstanding my performance which I graded only average. Our board is is denial about our financials , It seem the members think they don't have any responsibility for the financial condition of our hospital. All are willing to promote there chosen project to some degree even at the expense of the overall best interest of the Hospital. But for the most part only want to come to meeting eat supper and leave without much impact.
Vj had a long week-end and is taking her afternoon nap , she did great and gets the trooper of the week award . We will continue to explore option to keep her healthy . We had a suggestion from another couple who found the best way to travel with a HD person is by train, we May try that.
Life is good!
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