Is anyone or any site keeping a roster/log of ALS patients and the sports & professions they are affiliated with? It would seem to be a potential good database to track commonalities.
Great idea on keeping a roster of PALS and sports and professions. As far as I know it's not being done comprehensively except for the VA registry that was discontinued last year.It seems compelling to me to capture the professional and environmental dots that some smart people can then connect. The ALS Registry was authorized last year, but so far it is only funded for three "pilots" that don't come close to any kind of complete database.I think that a good opportunity would be to keep a visible tally of sports connections in hopes that players' unions and league officials might raise some questions that will result in some action.
Michael,I'm inspired by your courage and determination to fight ALS and educate others. My grandfather passed away from this disease about 8 years ago so it has touched me personally. I want to tell you about a 5k race that I'm helping to organize. The race director's family also has a family member battling ALS right now. We wanted to build awareness for ALS and raise funds for the ALS Association so we began last year to plan a 5k for this Spring. The race director, Jason- also ran the St. George Marathon 2 years ago in the name of ALS and got sponsors to pay him for each mile he ran, then he donated it to the ALS Association. This upcoming 5k will be held in St. George next month, March 28th. It is non- profit and all proceeds will go to the ALS Association. The website is www.als5k.com. All details are on the website. I thought you'd like to know about this fundraising opportunity. Please let others know about it! If businesses or individuals would like to sponsor the race there is a tab "become a sponsor" right on the homepage at www.als5k.com. Best wishes to you & your family in your challenging days ahead! Christi Dieckman