tag:blogger.com,1999:blog-62716487695149713.post7236770266883406422..comments2023-10-09T02:33:17.014-04:00Comments on ALS ADVOCACY: The Bravest Person In This Year's Indy 500 Isn't Driving A CarALSadvocacyhttp://www.blogger.com/profile/15638650524805735994noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-62716487695149713.post-69085125323560079902010-06-01T12:55:56.314-04:002010-06-01T12:55:56.314-04:00I have ALS & I am on a drug study to STOP ALS,...I have ALS & I am on a drug study to STOP ALS, not cure it. No one is really sure on how or why ALS starts; which is the biggest part of the problem. My drug study is funded by the Mayo Clinic, Jax, Fl. & the Mass. Gen. Hospital.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-41743731635343156482010-05-28T20:16:17.569-04:002010-05-28T20:16:17.569-04:00Anon 4:33, I think that those would be great quest...Anon 4:33, I think that those would be great questions to ask the ALS Association. This site is provided privately to promote advocacy and awareness and is not part of any ALS 501c3.<br /><br />If you are able to find the derivation of those numbers, I think a lot of people would be interested. Is the $500mil research or benefits?<br /><br />Thanks for asking, but this isn't the place to get the scoop from ALSA. <br /><br />In my personal opinion, the lack of results is certainly frustrating... but I believe in that same big picture that ALS research is underfunded relative to the complexity of the problem and the costs of not having a cure. Just my 2 cents.<br /><br />And now back to our man with ALS and the Indy 500...ALSadvocacyhttps://www.blogger.com/profile/15638650524805735994noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-42469681371835478912010-05-28T16:33:35.293-04:002010-05-28T16:33:35.293-04:00I understand tne ALS Association has advocated for...I understand tne ALS Association has advocated for over a half billion dollars for ALS research. What therapies have come out of this huge expenditure of funds? I have ALS and I am only familiar with one FDA approved drug specifically for ALS. And it is supposed to extend life by a few months and cost over $800 a month. How come?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-81686171098733988022010-05-28T08:28:04.939-04:002010-05-28T08:28:04.939-04:00This should be required reading for ALS advocacy m...This should be required reading for ALS advocacy month!Anonymousnoreply@blogger.com