Monday, July 27, 2009

ALS Registry For 250 Please, Alex

Since many of us have questions about the status of the ALS Registry that we worked hard to have passed into law, perhaps we could have a little fun and ask for information in the form of a question. Below we have enough clues for a full Jeopardy! category --
  • The news from the June meeting of investigators running the ALS Registry pilots
  • The spending to-date on the pilots
  • The next set of goals and deliverables for the pilots
  • The date for implementation of the full registry
  • The status or composition of the ALS Registry Advisory Committee

Friday, July 17, 2009

Is RT Turning The Fight Against ALS Into A Team Sport Rather Than A Competition?

Could it be that the simple concept of the retweet is breaking down decades of fences and walls between ALS organizations?

We finally see some ALS organizations making great comments and other organizations and individuals are retweeting (with full credit to the originators) to their followers.

If you don't tweet, I urge you to get a twitter account and follow some ALS tweeters. It's cooperative. It's energizing. It's a great way to spread the word.

Many with an interest in conquering ALS keep spinning each others plates rather than letting them crash to the ground.

The following blog post has some suggestions:

Be there nimbly or be square. Cultural process change of historic proportion could be in the making.

Thursday, July 9, 2009


Tina Taconic from San Jose Wins

The research department at St. Decon Gene Labs unamiously nominates Tina Taconic for Mouse of the Month. This award is a result of her commitment to finding a cure and an end to ALS. A wonderful mother of 16 that has become one of the best in her strain working with the research team. Her and most of the children have signed a contract paying her breeder $2000.00 for each sibling that joins the program. She comes from a family of dedicated mice dating back several years to the 1950's.
We found Tina at rest following a long day of several injections in cage A42. We ask if she had a moment for a few questions about her commitment. "I signed up for the long haul but it would be nice to give our species a rest and move on to something new". "I would like to see new funding and research using Stem Cells of any kind". We asked her about any possible new developments in ALS. She said, "the team is working very long hours and each day is a new challenge because they always come up with a new compound to test on me". "Do you get any rest or time off?" "Thats silly, I get a treatment and after a few hours they want me walk on the treadmill and do my normal series of exercises". Our last question was about the research time line. "Do you think a cure is in reach?" Tina looked at us with those tiny black eyes and said, "you know it takes a lot of money to find out whats causing ALS". "We need a Presidential Mandate that will challenge a cure for ALS in 10 years or less and provide the funding for it". Whatever gave you that idea? "Well , sending Mice into space is just too easy these days, the nation is ready for a new Challenge". With a statement like that we see why Tina is Mouse of the Month.