May 18, 2001In the next week or so, patients with benign essential blepharospasm (BEB) and Meige's syndrome, living in the United States and on the mailing list of the Benign Essential Blepharospasm Research Foundation, will receive a questionnaire from BEBRF. This questionnaire is part of a research project entitled "The Familial Occurrence of Blepharospasm," whose principle investigators are Drs. Mark Stacy and Padma Mahant of Barrows Neurological Institute in Phoenix, Arizona.
This is a detailed questionnaire and its purpose is to determine environmental, genetic and other factors that may be important in the development of blepharospasm and Meige's syndrome. We hope those patients receiving the questionnaire will decide to participate and take the time to fill out the form and return it in the postage paid envelope that will be included with the questionnaire. This is very important to the success of this study. The deadline to return the questionnaire is June 30, 2001. This study has been funded by the Benign Essential Blepharospasm Research Foundation.
--modified by Webmaster at Mon, May 21, 2001, 21:00:27
Re: Participate in a research project
I'll be looking for it in the mail. Thanks for letting us know it is on it's way. I would encourage everyone to participate and if you have difficulty reading, get someone to go over the questionnaire with you. If you don't know how to answer a particular question, who would a person contact for clarification? Shirley in AR.
Re: Participate in a research project
Would like to participate in the Research project for BEB and
Meige. Please send information.Address: June Pearson, 321 South Scott St., Lima, Ohio 45804
Related link: http://www. blepharospasm.org/forums/beb/post
Re: Participate in a research project
June,
You will receive a copy of the questionaire if the BEBRF has your address. If they do not you should contact them and give them your address. They don't always read the bb. Their address can be found in the Welcome to Newcomers at the top of the page. Or just email them.Shirley in AR.
Re: Participate in a research project
I am looking forward to this. My grandmother and two of her siblings, both of whom are now deceased, have beb. My grandmother has throat spasms and hums all the time and she also has tremors. My cousin developed mild tremors in her upper 30's and my dad is beginning to show signs of temors as well. We definitely have a genetic link-who knows why I got it at 26 but I certainly hope they can gain enough knowledge so that my girls will be spared!
Re: Participate in a research project
Is it too late to be included in the Familiar Occurences of BEB research study?Shelley Chambers
Re: Participate in a research project
It's not too late. The deadline to return the questionnaire is June 30. I only received mine yesterday. As with the newsletter, everybody gets theirs at a different time because it goes by bulk mail which is not all sent out at the same time by the post office.
Nilda
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