tag:blogger.com,1999:blog-5166169592714997268.post4800748516283019866..comments2024-01-13T10:34:55.490-06:00Comments on Legal Pub: Lorenzo Odone Ends His Long Battle With Adrenoleukodystophy (Lorenzo Disease) Update: Dalton's Journey Continues ~by Legal PubLegal Pubhttp://www.blogger.com/profile/03464130635305514783noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-5166169592714997268.post-14746074636778897572013-11-06T12:07:13.421-06:002013-11-06T12:07:13.421-06:00Update 11-6-13: Augusto Odone, the Italian econom...Update 11-6-13: Augusto Odone, the Italian economist who ignored conventional wisdom to invent an experimental medicine that extended the life of his terminally ill son and inspired the film," Lorezo's Oil," died on Friday November 1, 2013 at the age of 80.<br />Legal Pubhttps://www.blogger.com/profile/03464130635305514783noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-51188540990432568762012-03-08T09:23:36.528-06:002012-03-08T09:23:36.528-06:00So sad for these children.So sad for these children.curiousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-38530342821025101612012-02-15T13:49:36.224-06:002012-02-15T13:49:36.224-06:00You did a great job on this subject. Lorenzo was ...You did a great job on this subject. Lorenzo was a hero. Shame more cant be done for these poor kids.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-53520223219061322522011-06-19T01:03:23.779-05:002011-06-19T01:03:23.779-05:00Incredible, I just finished watching the movie and...Incredible, I just finished watching the movie and wanted to find out what was happening 20 years later. Very sad!yossi@paradisefriends.comhttps://www.blogger.com/profile/15944981253066591974noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-53073214030837113532011-03-24T07:39:06.928-05:002011-03-24T07:39:06.928-05:00nice site, but horrible disease. Let's pray f...nice site, but horrible disease. Let's pray for a cure.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-69234263646836269592010-12-28T17:50:38.031-06:002010-12-28T17:50:38.031-06:00Just popping in to say nice site.Just popping in to say nice site.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-23608296178642853592010-12-27T07:24:15.882-06:002010-12-27T07:24:15.882-06:00Illustrations for this disease might bring folks t...Illustrations for this disease might bring folks to tears. Children die all the time but not with this much suffering.Just One Mom of Manynoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-44441081324523706432010-12-15T16:10:21.783-06:002010-12-15T16:10:21.783-06:00i am a free illustrator, is there a chance you'...i am a free illustrator, is there a chance you'd like to use some of my pics? i guess it would be fun for your cms :-D<br />really enjoy your site structure! send me a email please in case you want to colaborateAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-62306896362517615982010-10-19T12:51:56.075-05:002010-10-19T12:51:56.075-05:00Debilitating...Debilitating...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-77072481116856033012010-09-20T14:13:45.970-05:002010-09-20T14:13:45.970-05:00This is a heartbreaking disease.This is a heartbreaking disease.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-33161898695999871132010-08-31T16:14:58.471-05:002010-08-31T16:14:58.471-05:00thanks for the update!thanks for the update!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-45422949510528806812010-08-31T14:36:06.434-05:002010-08-31T14:36:06.434-05:00His passing is bittersweet. He was cremated and b...His passing is bittersweet. He was cremated and buried his ashes in New York.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-4214910842388332312010-03-20T10:09:22.393-05:002010-03-20T10:09:22.393-05:00Update 3-20-10: Legal Pub was contact on behalf of...Update 3-20-10: Legal Pub was contact on behalf of Dalton, a young boy with this dreaded disease. For anyone interested in reading about Dalton's journey a link is on the front page.Legal Pubhttps://www.blogger.com/profile/03464130635305514783noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-53020223594977117512010-01-20T07:54:57.407-06:002010-01-20T07:54:57.407-06:00Skin care adds have nothing to do with this seriou...Skin care adds have nothing to do with this serious disease.<br /><br />Consequently, the DELETE button!Legal Eagle 3noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-48602603285592940452008-06-12T14:33:00.000-05:002008-06-12T14:33:00.000-05:00The end game is what it is all aboutThe end game is what it is all aboutAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-37344647733552323192008-06-10T17:22:00.000-05:002008-06-10T17:22:00.000-05:00Keep strong Kate, it will be worth it in the end!Keep strong Kate, it will be worth it in the end!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-32968361836487219362008-06-06T11:31:00.000-05:002008-06-06T11:31:00.000-05:00What a brave lad.What a brave lad.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-21738847723265608212008-06-06T10:35:00.000-05:002008-06-06T10:35:00.000-05:00I take my son out to Kennedy Krieger once a year a...I take my son out to Kennedy Krieger once a year and he's in the research study at this point. I took him this morning to get his monthly blood draw taken care of. He's four and has to explain to me how to sit still and not worry because he's a big boy and can handle it.Katehttps://www.blogger.com/profile/12824507688252059011noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-12017556799355536802008-06-06T08:08:00.000-05:002008-06-06T08:08:00.000-05:00The oil and a good diet is the secret, in my opini...The oil and a good diet is the secret, in my opinion.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-76364627044682928502008-06-06T07:42:00.000-05:002008-06-06T07:42:00.000-05:00Dr. Moser is now dead. But the Docs at Kennedy Kri...Dr. Moser is now dead. But the Docs at Kennedy Krieger are all top notch state of the art health care providers.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-57976496495960944922008-06-05T16:40:00.000-05:002008-06-05T16:40:00.000-05:00lucky is as lucky does...lucky is as lucky does...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-57217885767475994462008-06-05T14:46:00.000-05:002008-06-05T14:46:00.000-05:00Cobra venum? If a snake such as I were to bite yo...Cobra venum? If a snake such as I were to bite you, would it help your son? I might be willing to help if it would bring hope. LOLViperhttps://www.blogger.com/profile/05681737307667407346noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-48043108946892040732008-06-05T14:09:00.000-05:002008-06-05T14:09:00.000-05:00And I continue to pray that he is one of the "luck...And I continue to pray that he is one of the "lucky" ones. His treatment started before any symptoms showed so I'm hopeful that he will never have the effects of the disease. My Dad has the adult form of it and is in a wheelchair. He's looking into a study where they use cobra venom to stop the deterioration.Katehttps://www.blogger.com/profile/12824507688252059011noreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-87932572211375213422008-06-05T13:32:00.000-05:002008-06-05T13:32:00.000-05:00The disease is really scary at first. But if your ...The disease is really scary at first. But if your son is one of the lucky ones, severe symptoms may never show up!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5166169592714997268.post-62880685402441158362008-06-05T13:22:00.000-05:002008-06-05T13:22:00.000-05:00and modesty I see...and modesty I see...Anonymousnoreply@blogger.com