tag:blogger.com,1999:blog-17605816.post2285231803071564767..comments2023-10-23T11:49:58.374-07:00Comments on Stop Screaming I'm Driving!: Hopingcarriehttp://www.blogger.com/profile/04038972194323564240noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-17605816.post-72254008733430002822009-03-13T16:18:00.000-07:002009-03-13T16:18:00.000-07:00I am always sorry to hear about a Duchenne diagnos...I am always sorry to hear about a Duchenne diagnosis. For Duchenne, THE place to be on the internet for support, information and to connect to other people is www.parentprojectmd.orgAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-17605816.post-64929953571407843542009-03-09T18:48:00.000-07:002009-03-09T18:48:00.000-07:00Thank you Sheila. Thank you so very much. I will...Thank you Sheila. Thank you so very much. I will forward this entire comment to her. :)<BR/><BR/>- Carriecarriehttps://www.blogger.com/profile/04038972194323564240noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-90145751417409582802009-03-09T15:14:00.000-07:002009-03-09T15:14:00.000-07:00Hi I hope I can write this before my connection di...Hi I hope I can write this before my connection dies- Ugh!<BR/><BR/>I have done some research and found the best article on emedicine.com <BR/><BR/>http://emedicine.medscape.com/article/1173204<BR/><BR/>the article was last updated this last February 09.<BR/><BR/>It gives the run down and the latest research. Unfortunately it looks like currently there is no way to stop what will eventually happen but they are looking at ways to slow down the process and a lot of research is underway. <BR/><BR/>The therapeutic strategies are in 3 basic groups<BR/><BR/>1.Supportive medical therapy<BR/>2.Research gene therapy<BR/>3.Research cellular therapy.<BR/><BR/>The article states that the gene and cell approaches are likely to be curative but are still under investigation.<BR/><BR/>Please have your friend read this article and keep seeking out medical facilities that might offer some hope and answers. <BR/><BR/>Information about Duchenne clinical trials can be found by looking for Duchenne Muscular Dystrophy on ClinicalTrials.gov for eligibility criteria. <BR/><BR/>My response on my blog was in no means telling her to give up. I hope that she can live and enjoy the present time and hope for a future for her son and family. <BR/><BR/>Let me know if I can help in any other way.<BR/><BR/>Blessings- Sheila Cason MDSheila @ Dr Cason.orghttps://www.blogger.com/profile/01200591294638830903noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-32826308137519631822009-03-04T08:05:00.000-08:002009-03-04T08:05:00.000-08:00My heart breaks to hear about this family getting ...My heart breaks to hear about this family getting this devastating news. I am the mother of a 10 year old boy with Duchenne Muscular Dystrophy. I am happy to communicate with this family to share information about this diagnosis. Our son was diagnosed at 4 years old and at 10 he is still walking and doing very well. Scientists and researchers are making extraordnary strides every day toward treatments and ultimately a cure for this disease. My son is the MDA State Goodwill Ambassador in Michigan and he is currently in a very promising clinical trial through Cincinnati Children's Hospital. Again I would be happy to communicate with this family and share some of the information that I have about this devastating disease! acureforalex@sbcglobal.net<BR/>KristinAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-17605816.post-81278189657415965842009-03-03T20:13:00.000-08:002009-03-03T20:13:00.000-08:00I will look into some recommendations for you. Hav...I will look into some recommendations for you. Have they tried the national organization yet? There usually is one and it has TONS of info regarding the diagnosis. <BR/>How sad and scary- I can't even imagine what that must feel like and I too have the question what prompted the testing in the first place?Sheila @ Dr Cason.orghttps://www.blogger.com/profile/01200591294638830903noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-89667055142299885792009-03-03T18:08:00.000-08:002009-03-03T18:08:00.000-08:00What heart-breaking news for this family. Many pra...What heart-breaking news for this family. Many prayers.Bethhttps://www.blogger.com/profile/17310546479590545425noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-46451708866747901482009-03-03T11:53:00.000-08:002009-03-03T11:53:00.000-08:00I don't get a ton of traffic, but I will post some...I don't get a ton of traffic, but I will post something at Sanity Department. Maybe someone will know something helpful. My heart goes out to this family.Kerriehttps://www.blogger.com/profile/00538129698829932559noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-62123244644063940022009-03-02T20:54:00.000-08:002009-03-02T20:54:00.000-08:00Oh, I'm so sorry to hear the news. Why did they ge...Oh, I'm so sorry to hear the news. Why did they get genetic testing? Unfortunately I don't have anything to offer except that everything I have heard is consistent with what they were told. If there is a university medical center near them there might be a study going on they could get involved in?Norahttps://www.blogger.com/profile/16507644743409364179noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-38900770134975374132009-03-02T06:48:00.000-08:002009-03-02T06:48:00.000-08:00I was also going to direct you to Her Bad Mother. ...I was also going to direct you to Her Bad Mother. If she isn't aware of anything directly, she might well be able to connect you with other people who will.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-17605816.post-19676487660371771022009-03-01T18:18:00.000-08:002009-03-01T18:18:00.000-08:00This is what Her Bad Mother's nephew has. It is pr...This is what Her Bad Mother's nephew has. It is progressive and there is no cure yet. It is a very sad diagnosis.Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-26503093188299202722009-03-01T17:47:00.000-08:002009-03-01T17:47:00.000-08:00I have no information to share, but heart goes out...I have no information to share, but heart goes out to the family, and I'll say prayers for them all.monstergirleehttps://www.blogger.com/profile/15017980744939803016noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-2748009214063087642009-03-01T09:46:00.000-08:002009-03-01T09:46:00.000-08:00Oh Carrie..... My heart is breaking. I have adde...Oh Carrie..... My heart is breaking. I have added this family to my family's church prayer list. I firmly believe in the power of pray and hope it brings comfort to them. I will also spread the word to my friends around the world for possible answers/solutions and of course more prayers. I will add this to my blog as well. xoJoanna Jenkinshttps://www.blogger.com/profile/10836376588710862173noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-4852861252355780232009-03-01T02:24:00.000-08:002009-03-01T02:24:00.000-08:00oh, my heart!oh, my heart!flutterhttps://www.blogger.com/profile/11828689769747130419noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-12363253337595230082009-02-28T19:07:00.000-08:002009-02-28T19:07:00.000-08:00man. That is the kind of story that just stops me...man. That is the kind of story that just stops me in my tracks. That poor family. They are in my prayers sweetheart!Ann(ie)https://www.blogger.com/profile/00671535020245819924noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-19069293341016399582009-02-28T08:11:00.000-08:002009-02-28T08:11:00.000-08:00Kind of puts the whole toothpaste in the sink into...Kind of puts the whole toothpaste in the sink into perspective, huh??<BR/>I sent you an e-mail with some info that may be of interest to your friends. I will keep them in my prayers.Jennifer Mchttps://www.blogger.com/profile/15612269384554882985noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-28143782911886505872009-02-28T07:47:00.000-08:002009-02-28T07:47:00.000-08:00So sorry to hear about their baby!! I will spread ...So sorry to hear about their baby!! I will spread your post to my family and friends also! We will keep them in our prayers and good thoughts. Keep us posted on them please. My heart is breaking for this family.Tamihttps://www.blogger.com/profile/14920657495023086072noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-66161706452098769822009-02-28T06:39:00.000-08:002009-02-28T06:39:00.000-08:00Oh gosh Carrie. My heart goes out to the family. ...Oh gosh Carrie. My heart goes out to the family. I will spread the post around and perhaps someone who know anything will hear it.<BR/><BR/>xoOHmommyhttps://www.blogger.com/profile/12712111068636100187noreply@blogger.comtag:blogger.com,1999:blog-17605816.post-77132713290597253232009-02-27T22:00:00.000-08:002009-02-27T22:00:00.000-08:00I'm so sorry to hear about what your friends are g...I'm so sorry to hear about what your friends are going through. I cannot imagine. They (and you) will be in my prayers. Please keep us updated.Carriehttps://www.blogger.com/profile/00902385449973265575noreply@blogger.com