Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 Kathleen, Thanks, it sounds like you are adequately addressing the privacy concerns (not mine really, I've already made much of 's medical info public, through postings here and my article in the Magic Touch, but I was thinking about others that might have those concerns). You made some good points about the privacy of onelist vs. a private website. And we all really appreciate the work that you and your husband have offered to put into this. As for seeing Dr. H., we've been quite satisfied with 's care at Stanford, and it's only an hour and a half drive from here, vs. flying all the way across the country to New York! Of course, we would do that for if we felt he needed to see her, but right now we think he's getting good care. We're quite fortunate to be within driving distance of two of the top medical schools in the country (Stanford and UCSF; the latter is where spent the first three months of his life). Maybe it's more important for people who are " borderline " RSS cases, or unsure about their diagnosis, or unhappy with their current doctors, to consider making the trek to see Dr. H. At least we'll get to see Dr. H. speak, and possibly meet her, at the Magic Conference in Chicago this summer. - Joe, father to , age 5 on Wed, 24 pounds, 36 inches, Gtube > Joe, I appreciate your concerns. I don't plan to use last names-perhaps > initials but we'll see, and we can password protect the site (which the > onelist is not). We can't put something like that out on the onelist > site > because there just isn't room, the site isn't set up for that, and there > would be no practical way to collect the data. I'm sorry I don't know > how > to describe to you exactly why in an e-mail. Of course we could just > paste > the bios into a word document and put it on the onelist site but that's > not > very useful and remember that the onelist is not secure. Anyone can join > and > lurk without us knowing who they are. Its a chat group-we really don't > know > each other at all. Don't be under the impression that we have any > privacy > here-remember how easy it was to join? I don't mind doing just a word > document with the pasted bios-its a lot less work but we were talking > about > something more useful. Brent would build an application, a database, > where > we could neatly organize information. On a website we own, we can only > let > people we know view the info. We'd have more control. It won't be > public > like a onelist. With a database, people can upload their own > information > w/o disturbing others info and then we can ask it things like: " Show me > all > of the kids who have curved pinkies " . I don't know if I'm explaining > this > well. Just ask me if you have questions. I don't want you or anyone > to > be uncomfortable with the idea. Its going to be a lot of work and there > is > some cost to Brent's company so I won't start it if people just want the > bios out on the onelist to look over. > > Thanks for the suggestion-I'll add g-tube placement, mic-key placement, > etc. > > About your Dr visit--the UPD-7 is only in 10% of RSS cases. Its found > in > the milder cases and where RSS occurs sporadically. Just if you were > interested. There are some interesting studies out there too. > > If you want to share data and info about growth hormone & periactin on > RSS > kids, you could show your endo or geneticist the Dr. H tape. My > geneticist > was very interested in it. Its very helpful information. Oh, and I was > thinking since Josh appears to be " very RSS " , maybe Dr. H would be > interested in following him. Could be a big help. Just a thought. > > Take care & good luck. > > Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially > diagnosed RSS yet) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 Katy, Great ideas. That's exactly what we're thinking of doing. In fact, I want to brainstorm with Dr. H , Dr. Wollman and hopefully, and from Magic.-as well as with all of you, of course. We'll create a mock up and run several tests before finalizing it. I will definitely be asking for everyone's help in the form of feedback and testing. I like the photo idea. I have Abby's 7 week, 7 month, 8 1/2 mo & 1 yr out there. On her website, which should be up in the next few days, we'll have a photo gallery with a picture of her for every month. Thought it would be fun to show how she's changed. I'll let you know when its up. I didn't realize how much I missed doing stuff like this after I quit my job. This is really exciting, and that much more so because its about helping our kids. We could make a real impact as a team. Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially diagnosed RSS yet) P.S. I'm happy about that " Lucent nerdy " brain of yours! Could come in very handy! :) > > >Kathleen: >You really have energized this list! If you need any help, in terms of >statistics or data representation, let me know. > >I suggest that once you have a database set up, you get maybe 3-5 volunteers to >populate it with their data, test it out, and really give you feedback on how >easy it is to use. Then, make modifications and open it up to everyone! Of >course, once it is up, you could accept people's suggestions, but I would hate >to see you go nuts with continually needing to modify it...Or, you could have a >one month trial period where everyone gets their data in, and then after a month > " freeze " the design of the database for a few months. > >My Lucent nerdiness is showing through! > >Thanks for all your efforts! >Katy > >p.s. I had an idea for photos: What if everyone posted the following 3 >pictures: Birth photo, 1 year and 2 year? So that we could get a scan at how >our children look at same milestones? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 Danna, Thanks. I'm glad others are as excited as I am. I do think we are doing something to help answer those questions. Its very empowering. Won't need the info for quite a while-it will take some time to design and build. Right now, I'm just asking for input on data people think would be helpful to collect. I have a pretty good list but as I am relatively new to RSS, I don't want to miss anything that you all know more about. We'll have a better idea of its design soon and will incorporate everyone's ideas. thanks for the enthusiasm-its great fuel!! Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially diagnosed RSS yet) Database Hi Kathleen, I think the potential the database offers is an exciting aspect for the RSS group as a whole. You know the phrase strength in numbers. we may at some time be able to convince the scientific world there is a need for more RSS research and they may come up with some answers to some difficult ?'s we face as parents. Keep up the good work. Danna. P.S. When do you need the info on our kids? ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 Hi Kathleen, I think the potential the database offers is an exciting aspect for the RSS group as a whole. You know the phrase strength in numbers. we may at some time be able to convince the scientific world there is a need for more RSS research and they may come up with some answers to some difficult ?'s we face as parents. Keep up the good work. Danna. P.S. When do you need the info on our kids? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.