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February 28, 2008
Two Important Days - Anti-Bullying & Rare Diseases
February 27 and 29 are two important days to be aware of for persons with facial difference. The first advocates for the prevention of bullying and the second advocates for the awareness of the concerns of persons with rare diseases.
February 27th became noted as a date in honor of anti-bullying initiatives in Canada and has spread through the social media. There are hundreds of blog postings, a Flickr group, a Facebook group, social news reports, and more - even a YouTube video.
Christi Clark: Wear Pink: http://www.wearpink.ca/
Facebook: Events: I Will Wear Something Pink on February 27th & Take a Stand Against Bullying: http://www.facebook.com/event.php?eid=21151549152
Facebook: Groups: Wear a Pink T-shirt on February 27th and Take a Stand Against Bullying: http://www.facebook.com/group.php?gid=22281224208
Flickr: Groups: Stop Bullying: http://www.flickr.com/groups/stopbullying/
NowPublic: Today is anti-bullying day - so wear some pink and get involved: http://www.nowpublic.com/culture/today-anti-bullying-day-so-wear-some-pink-and-get-involved
February 29th is International Rare Disease Day. It was founded by EuroDis and promoted by Denise Silber in Paris. The day's events and activities focus on promoting awareness of rare diseases and the concerns and issues related to them.
"Because we constantly need to raise awareness on rare diseases among decisions makers, health professionals and the general public. Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals ... Because we need to keep fighting for rare disease patients ... "
There is still time to join the Facebook group and show your support. Think about it, will you?
Eurodis: Rare Disease Day: http://www.rarediseaseday.org/
Facebook: Group: Feb 29th is Rare Disease Day: http://www.facebook.com/group.php?gid=8392774023
Posted by pfa at 11:46 AM | Comments (0)
February 20, 2008
Craniosynostosis Research Seeks Participants
We received the following announcement that might be of interest to some readers.
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We are researchers studying the causes of craniosynostosis and our ultimate goal is to identify genes and environmental factors causing this condition. This project includes collaborators from Johns Hopkins University, Children’s Hospital Boston (Dr. Mark Proctor, Dr. Johns Meara and Dr. John Mulliken), University of California Irvine (Dr. Virginia Kimonis), University of Oklahoma (Dr. Jayesh Panchal), Washington University in St. Louis (Dr. Alex Kane and Dr. Jeff Marsh). We are also collaborating with researchers from the United Kingdom, Brazil and Germany and our current study group includes more than 400 families.
We are continuing to recruiting families with at least one child with craniosynostosis. If they agree to participate each family member will need to sign a consent form. We will arrange for a clinical examination and blood sample collection from the child and his or her biological parents. These samples will be prepared so that we will not need another sample in the future. The families will not benefit directly, but we hope by learning about the cause for craniosynostosis that some day we will be able to provide better care to craniosynostosis patients. The results of our study will be published, but the participants will be coded by identification number and will remain anonymous.
These families will also be asked to participate in a survey, designed to identify environmental factors that may be causing craniosynostosis. All responses to the questionnaire will be kept confidential. There will be no charges to participants in the study.
You can register for the study and complete the consent forms and the epidemiologic questionnaire online through our research web site:
http://www.ucihs.uci.edu/pediatrics/drkimonis/craniosynostosis/index.shtml
Please contact:
* Alisara Ateerat (alisara@genetic-counseling.org) research coordinator and genetic counselor at UC Irvine, or
* Dr. Virginia Kimonis (vkimonis@hs.uci.edu).
For Northern California, please contact:
* Dr. Simeon Boyd (simeon.boyd@ucdmc.ucdavis.edu). or
* Ms. Erica Goude (erica.goude@ucdmc.ucdavis.edu), research coordinator .
Posted by pfa at 07:22 PM | Comments (0)
February 05, 2008
Book: The Church of 80% Sincerity, by David Roche
We are delighted to bring this new release to your attention. Notice, it is available TOMORROW!!!! So get your copy now. Highly recommended by Betsy ...
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PRESS RELEASE January 18, 2008
Contact: Tom Haushalter at Tom.Haushalter@us.penguingroup.com
For additional info: www.davidroche.com
Penguin Books is publishing David Roche's new book "The Church of 80%
Sincerity" (under the Perigee imprint) as of Feb. 5, 2007.
“It is not the fact of my disfigurement that wears at my psyche. It is
the fear and self-doubt of others, their very human concern about their
own social acceptability, their worry about being unloveable and
abandoned, which they project onto me.” - David Roche
David Roche, the author of “The Church of 80% Sincerity,” is an
excellent example of the working of the social model of disability.
Roche was born with a large venous malformation on the left side of his
face and neck. Surgeries and heavy radiation therapy in his infancy
further contributed to an appearance that others can view as grotesque
and frightening. With the face commonly being perceived as the locus
of the human persona, Roche is judged as being disabled, even though in
truth he meets none of the common physical criteria for disability.
Roche has for years played with this in his stage work, particularly in
his signature performance, “The Church of 80% Sincerity.” Now, in his
book of the same name, he works this territory with his customary wry,
warm wit.
Humor is the most subversive of the arts. In “Church,” Roche uses it
well to present a new paradigm for facial difference, one which
effectively challenges the prevailing social definition of disability.
Disability is not a tragedy or a reason for pity. It is not something
to be atoned for, nor something to be cured. Instead, Roche claims, for
him it has been a gift.
He shows clearly how his disfigurement brought him to a deeper level of
understanding of himself and of others. Roche says, “My face is unique.
My experience is universal.” And he shows how all of us have an inner
sense of being flawed, a fear of being unacceptable to others.
There is no hint that Roche has transcended his perceived disability.
Instead, it is clear that through it, he has come to be at one with
himself. He has found wholeness through, and with, what at first seemed
to be his flaws. That is the new paradigm, and it is a powerful one
that flows right from the heart of disability culture.
STARRED REVIEW FROM PUBLISHERS WEEKLY
The Church of 80% Sincerity _David Roche. Perigee, $19.95 (160p) ISBN
978-0-399-53390-7
The church of the title is not a formal organization but a concept-"the
church of choice for recovering perfectionists," Roche writes in a
powerful little book that's part memoir, part inspirational handbook.
"You can be 80 percent sincere 100 percent of the time, or 100 percent
sincere 80 percent of the time. It's in that 20 percent area where you
get some slack and you can be yourself." For Roche (now in his 60s),
being himself has meant coming to terms with a face so severely
disfigured by a benign congenital tumor that he's been spat at and
called a monster. He was rejected from a seminary because, he was told,
his appearance meant "people would not respect you as a priest." The
loss of the fathers of the Holy Cross is the general public's gain. A
performer and motivational speaker, Roche is frank and witty and
incapable of resorting to sentimental pap. He's used to people staring
at him, and he admits he's been tempted to respond to pestering,
obnoxious boys by saying, "Well, my face is like this because when I
was a little boy like you, I touched my wee-wee." He's well aware that
people find him inspiring, but he doesn't try to hide his flaws, and
that makes him more inspiring. (Feb.)
Posted by pfa at 09:27 AM | Comments (0)