Tuesday, 14 February 2012

Network Joy!

Joy, yes joy! 

Yesterday, the Huntington’s Society of Canada (http://www.huntingtonsociety.ca/english/) announced the first-ever research breakthrough for a potential treatment for Huntington’s disease (HD). http://www.eurekalert.org/pub_releases/2012-02/uoaf-uoa021312.php

HD is a devastating genetic neurological disease that is incurable, untreatable and which each child of a person with this disease has a 50% chance of inheriting this terrible and terrifying disease. Some describe it as a cross between Alzheimer’s and Parkinson’s. My family is directly impacted by HD.

So what’s the link to networks?

Networks play an incredibly important role in such medical breakthroughs. And there are many players in this network who have roles both large and small. These would be just a few of the many network players (most who will never meet each other but who all share a passion for finding a cure):

- Researchers at the University of Alberta
- Past researchers for HD all over the world
- Researchers who mapped out the human genome
- Researchers who found the defective HD gene markers
- Government funding for HD research (very, very, very limited compared to other diseases)
- Researchers for other diseases that have relation to HD – Alzheimer’s, Parkinson’s, etc.
- Online tools and technologies that allow researchers to share information easily
- Huntington Societies around the world which provide such awesome support to families and which advocate for the disease and fund research
- People affected by HD who take part in clinical trials and various tests
- People who let researchers use their computers to compile and crunch data regarding various diseases including HD under the Folding@Home project http://folding.stanford.edu/
 Donors who give to research (including one anonymous donor who gave 5 million to HD!) 
Families affected by HD who raises funds for research by walkathons, bake-a-thons, selling flowers, begging and pleading and grovelling for money, etc. etc. 
 My son who helped me bake pies to raise money for research!

AND, most importantly, those who suffer from HD who have held on to hope in the face of despair brought on by this devastating and incurable disease!

This is not a cure, but perhaps the beginning of a cure. And a day I never thought I’d see. A big HURRAH for networks! THANK YOU! It's a day for joy! 

I'm not sure whether to put the course tag for this post, it feels a bit weird, but I'm so happy, so here goes: CCK12 

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