tag:blogger.com,1999:blog-6913521903629178880.post750788224749228822..comments2023-10-23T13:20:06.086-04:00Comments on Hannah's Shenanigans: Baltimore and Research StudiesBethhttp://www.blogger.com/profile/10092198491274193931noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6913521903629178880.post-55064014383632855422011-01-18T04:13:58.444-05:002011-01-18T04:13:58.444-05:00Subhan Allah! I'm glad the bird did well. I ...Subhan Allah! I'm glad the bird did well. I had my medical appt today and probably did worse at the blood draw than she did! can't wait to see you TOMORROW insha'allah!!<br />Love KKatehttps://www.blogger.com/profile/15360784921231256687noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-2616892009000049572011-01-16T23:42:18.474-05:002011-01-16T23:42:18.474-05:00Love the pics of Hannah!
YEAH!!!! Kate's comi...Love the pics of Hannah!<br /><br />YEAH!!!! Kate's coming home!Tracyhttps://www.blogger.com/profile/14069674597754485710noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-3304523804454276472011-01-16T21:51:45.615-05:002011-01-16T21:51:45.615-05:00This is wonderful information, and I'm hoping ...This is wonderful information, and I'm hoping you are successful at stirring up interest. We first must fix our government spending, and then there might have more money available to devote to great causes like this. GO GIRL!<br /><br />Mamanharpnmehttp://harpnme@comporium.netnoreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-50139385917780953122011-01-16T21:14:17.755-05:002011-01-16T21:14:17.755-05:00Excellent Trip! Glad to hear that Hannah will be p...Excellent Trip! Glad to hear that Hannah will be participating in the trial. Thank you for helping our DS community! (Also, I like that submarine!)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-8949473681496481532011-01-16T20:16:43.943-05:002011-01-16T20:16:43.943-05:00whew, sounds busy but well worth it. Can't wa...whew, sounds busy but well worth it. Can't wait to see how this unfolds.To Love Endlesslyhttps://www.blogger.com/profile/11528196412794557736noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-46972374997963627682011-01-16T17:21:52.410-05:002011-01-16T17:21:52.410-05:00I am sooooooo interested to see how Hannah does wi...I am sooooooo interested to see how Hannah does with this. We will be watching this one closely, not just because of Hannah, but because of a strong family history of Alheimer's +Christopher's brain damage. <br /><br />He has actually participated in quite a few studies. He was one of the first babies in the U.S. to receive Nitric/Helium to "float" oxygen into his lungs after heart surgery. I absolutely believe that is what saved him from having to go on ECHMO. He has also participated in a pulse oximeter study, thyroid, a genetic study from Kennedy Kreiger having to do with the 21st Chromosome and Heart Defects, another genetic study regarding polycystic kidney disease (He has 18 of the 21 markers for PKD but does NOT have true PKD!) . I think that is it. <br /><br />We have to watch what we are allowed to be in as all of his other issues can sometimes skew the results. :( <br /><br />Many times, as in the case with the study that we were in with KK, they will send the info for your doctor to fill out and to get a blood sample. You just send it back and that is it. We just added it on to a regular appointment - so we didn't have to travel cross country to participate. If you are interested in a study, it might be worth a call or e-mail to see if they will do something like this. :)<br /><br />Steph and ChristopherStephaniehttps://www.blogger.com/profile/08323989778846355329noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-51924517429402264242011-01-16T14:22:27.074-05:002011-01-16T14:22:27.074-05:00I check periodically at clinicaltrials.gov Some in...I check periodically at clinicaltrials.gov Some interesting ones on there. One looks like a good excuse to travel to France. LOL! I keep hoping for something in Pittsburgh until the littles are old enough to travel farther. <br /><br />Thanks for the info on how to find more studies.Brandiehttps://www.blogger.com/profile/01704697731192764110noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-5821634652260642792011-01-16T13:02:58.731-05:002011-01-16T13:02:58.731-05:00How did you find out about the study? What age is ...How did you find out about the study? What age is the Rivastigmine targeted at? We've been able to participate in several studies with the Emory Down syndrome clinic and Chase is not yet even two. I figure even if it doesn't personally help Chase, it is bound to help the DS community at large. I think you're right that the people conducting the studies need to advertise better though!!M.Hiltonhttps://www.blogger.com/profile/11241956439079629519noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-24077274424455438822011-01-16T12:49:40.262-05:002011-01-16T12:49:40.262-05:00Very interesting stuff. I will follow along.Very interesting stuff. I will follow along.My name is Sarahhttps://www.blogger.com/profile/12532019900834158013noreply@blogger.comtag:blogger.com,1999:blog-6913521903629178880.post-91293140542377477742011-01-16T10:47:23.588-05:002011-01-16T10:47:23.588-05:00As you know, Kevin and I are newbie parents and yo...As you know, Kevin and I are newbie parents and you have me fired up about being a part of research studies. I'm going to see what is out here in Dallas.Kristin B.noreply@blogger.com