Re: Family Research
Alan,
My understanding is that they're still hoping to receive more surveys. Few people responded in view of the numbers that were sent out. I never realized how long these studies can take. The NIH mexiletene study has been going on for at least 6 years (not enough patients) and the blue green algae study at Johns Hopkins has been going on for almost that long. I guess we have to continue to hang in with our eyes closed.
Nilda
Re:Research
Nilda, how are patients recruited for these studies? If a study is being done in a certain location and those specific researchers are just waiting to happen upon a BEB patient in their local, they are going to come up short of patients.
I would think that it would serve them and us better if information and criteria for these studies was routinely posted on this website and the newsletter giving numbers and information about how to go about participating in the studies and who to get in touch with. They might come up with a few more volunteers if this was done. If I hadn't listened to an audio tape of the 99 conference where Dr. Perlmutter spoke of his PET Scan study and gave a phone number to call, I would not have known about it. As it was, I participated in that study. I believe that if lack of patients was the main factor behind the studies not being completed that someone needs to look at the recruiting practices. We're spread few and far between but we are out here.
The Mexiletene study was mentioned at the last conference but I don't remember any real information being given on who to contact or how.Shirley in Arkansas
Research Projects-Shirley
Shirley,
The mexiletene trials were advertised several times in the newsletter. The blue green algae was offered to Dr. Millers's patients at JHU because he has so many. I didn't qualify to participate in it because I had started taking it on my own. It didn't help me but It wasn't the same brand name they were testing. They video taped patients eyes to see if the blinkling and eye closing actually decreased. I hope the results are out soon.
Re: Family Research
What's the blue green algae study? I don't know anything about it (I know about the algae though). Is this something being studied specifically regarding blepharospasm? Can you direct me to wherever there is more info about it? Thanks!Shanasy - I can handle seaweed!!!!!
Re: Family Research
I asked Mary Lou about this study at my support group meeting. I too have many family members affected. She said they were organizing the data and were to "U" in March. She was very disappointed, however, because the foundation finally got someone to do a genetic study and out of 4,000 questionaires sent out only 1,400 responded.
Re: Family Research
Kelly, if that is the answer you received which I am sure it is, then I am really disappointed that nothing is getting done. Having spent a lot of money over the years in sending surveys and paying for focus group studies, I will tell you that getting back 1,400 out of 4,000 questionaires sent is a pretty high percentage of return. Anytime you get in excess of 30% you have more than enough representative data to work with. I guess I just wonder what they are doing with the 1,400 questionaires. One has to start somewhere and if they cannot get the data they need from the people who replied, they certainly are not going to get it from those that didn't. It does not take a rocket scientist to figure out that if there is even a small number of patients who have numerous members of their family with this disorder and given that this is so rare to begin with, then the conclusion has to be that there is soem genetic connection. Now, the question becomes how do they isolate the commonality. They will never get to it without getting blood samples from the families. I guess that I have no patience any longer. If I were still working and this project was under my control, it would have either progressed much faster or someone would have been out of a job and a new person put in charge of it. After all, it is our research money that is paying for this so called study.....Alan
Re: Family Research
Don't shoot the messenger. It was my understanding that they are still going ahead with the study, just disappointed in the number responding. Since they were to the "U" , I'm guessing they will be ready for the next step soon but I don't know what that step is-I'm a CPA, not a scientist. My grandmother and I were involved in a study many years ago. We had to send blood to a hopital in New York. Never heard from them again!
--modified by Kelly Saffell at Fri, Apr 19, 2002, 11:26:27
Re: Family Research
Kelly, sorry if I came across as shooting the messenger as that was certainly not my intent. I was only voicing my frustration at whomever is doing the study and I guess the foundationf or not getting on their backs if it does not look s though it is progressing. I too have been involved in many a study that got nowhere and was only something done to keep people in jobs for a period of time. Being a Sales guy at heart, that is why I always loved incentive compensation as it drove results versus paying for complacency...Alan
Re: Family Research
Agree 100%! Off the subject, are you attending the conference? I thought I remembered someone (you?) posting that you were speaking on the patient panel. I am speaking also and was just curious.
Kelly
Re: Family Research
Yes, my wife Jan and I are both going to the Conference. Lst year was the first one that I missed since coming down with BEB as it was my mothers 90th birthday that weekend and I had a big party for her.Mary Lou asked if I would be the monitor for the patients panel. I believe she wants me to speak on soemthing also. I told her I would do whatever she wanted me to do. I probably will not have a problem keeping anyone else but myself to the allotted time. As you may have gathered and others can attest from my previous participation on panels, that I can talk forever. (Not that I really say much). Anyway, I am looking forward to seeing some old friends and meeting some of you that I have come to know via this Bulletin Board. While we all may have differences of opinions on things, I truly believe we are trying to help each other out. Talk to you soon...Alan
Re: Family Research/Project for Alan
Alan, why don't you go back to work in a small way and take on some such project? You have the knowledge and expertise and we'll all give you our support (along with lots of advice and gripes!).Sally in North Idaho who loves to think up things for others to do.
Re: Family Research/Project for Alan
Sally, I don't know if I can ever go truly "back to work", however I do quite a bitalbeit not at the pace I am used to. I do some work in trying to raise funds for the foundation. Although I have raised several thousands of dollars, I am disappointed that I have not done what I thought that I could. I am also very active in my local Knights of Columbus Organization where I am the Grand Knight. Our Council is a great one and I am proud to say that last year, we gave away over $120,000 to charities raised by our limited (214) members. My plans prior to BEB were to retire early and spend the rest of my life with my wife traveling and doing charitable work. Unfortunately, the eye situation has limited both somewhat but I still try my darndest...Alan
Re: Family Research/Project for Alan
Alan, I know you do a wonderful job of sharing your talents, money and (most of all) your heart with many different worthwhile causes. I was really complimenting you by pointing out what a good leader you would be for a research cause that those of us in far corners of the world could participate in.Don't stretch yourself too thin and don't stress out over not being able to do more. We each let our candle shine in our own way and that is all God expects of us. I'll bet you are enjoying the swimming pool by now if the heat is hanging around ... and how about the new neighbor (or is she in the braille SI issue??). Enjoy the spring and your beautiful grounds. Sally in North Idaho who is very willing to let the heat remain on the opposite side of the U.S.
Re: Family Research/Project for Alan
Sally, I don't have the pool open as yet. It is still alittle early here in New England. While it was in the 90s the other day and in the high 70s today, it is not about 45 and is going to be in the 40's or low 30's with snow expected early next week. My Koi fish are totally confused as they hibernate in the winter and I stop feeding them. With the hot weather, I started feeding them and now that the water is cooling down again, they are starting to quit down again. They are totally confused. I can't wait for the hot weather to really get consistant so I can get my plants out of my basement and into the ground outside. The people came to dig my well yesterday and have started. I am hoping that they don't have to go too deep. We have a water ban on as it has been so dry so I think that I mentioned that I am putting in a well for my sprinkler and drip irrigation systems for my lawn and flowers.Oh well, long winded as usual. Talk to you soon. I just got back from spending the day counting money for my K of C annual Tootsie Roll Drive. We raised alittle over $7,000 today and hope to do the same tomorrow. Everything we raise goes to the mentally handicapped in our community. My eyes are really tired and I think I will call it a night early....Alan
Re: Family Research/Alan
I was wondering about that also and i think a pretty significant number of us filled out that thing. By the way, did the earthquake effect you at all?
Re: Family Research/Alan
Kathy, to tell you the truth, I didn't feel it at all as I was in the shower when it happened. Most of the peole I talked to in town felt it and they said it lasted about thirty seconds. It was no big thing but we do not get many out here that are in the 5 plus magnitude so it was news...Alan
Re: Family Research/Alan
Alan, I am starting to think about this family research project even more. The ones of us that really wanted to find a cure for this blasted thing , filled that out. Also the ones on this bb posting frequently want a cure. Maybe the others only have a mild case, but we do deserve some answers. And I don't think it was a waste of time. Anything that can shed light on beb is worth the effort!
Re: Family Research/Alan
In my mind, it certainly is a waste of time if noone does anything with it.
Re: Family Research/Alan
Well, aren't they still working on it?!
Re: Family Research/Alan
Kathy, you got me. I have no idea if they are working on anything. That's the problem.
Re: Family Research & Project in Salt Lake City
Both my Mother and I quickly completed our surveys and sent them off, saying that we were willing to submit to tests or to travel to a central location of necessary. We've heard nothing.I also heard sort of second hand about a photosensitivity study being conducted in Salt Lake City. That is not too far from us and I could have gotten there, but by the time I had the information there was only a couple of day's notice before the deadline and I couldn't arrange transportation that quickly. I agree with Shirley that if more publicity were given to the different studies and surveys, more of us would possibly respond. I am tired of this affliction and would like to see some new progress made. By the way ... what is the U that Shanasy mentions in a couple of her postings??? Sally in North Idaho who is glad the heat is with you and not here!!
Re: Family Research & Project in Salt Lake City,I have forms
Mary Lou brought survey forms from Utah's light sensitivity study to the Knoxville meeting. She gave me the left over forms for my meeting in Nashville. If anybody wants what is left over tomorrow for their support group or individually, just send me your address and I'll mail them Monday. My email address is in the newsletter. The survey had some good questions.
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