Let's Face It: Announcements Archives

May 12, 2008

Social Networking for the Facial Difference Community

Social networking -- finding a supportive community -- has always been important for people. Now online social networking has become important in the same way. Email lists, forums and bulletin board systems are tools for online social networking that have been with us for several years now.

There are many lists and groups for persons with a specific type of facial difference concern, but there does not seem to be a single place to bring together the discussions that are common to all of us. Let's Face It, as a site concerned with providing information and support across the spectrum of facial difference concerns and communities, is exploring the idea of using online social networking tools to address this gap.

We have created broad social spaces in a variety of online social environments. We don't know which of these (if any) will be most useful to the facial difference community. We hope that some part of this will prove to be useful. We thought it was worth trying. Here are some of the online social spaces. Please feel free to join us, and pass the word along to your friends.

"Let's Face It is here to provide information and facilitate connections and support for the broader facial difference community. By the broad community we mean individuals who have facial difference, or their friends or family. We mean any kind of facial difference -- cleft lip or other birth anomalies; as a result of trauma, injury, violence or burns; or resulting from cancer. We mean any kind of facial difference -- mouth, jaws, skull, nose, eyes, ears, skin, or other. There are many common concerns shared by anyone with facial difference -- let's come together here to help everyone with facial difference."

Google Groups: Facial Difference email group: http://www.google.com/groups/facialdifference/

Second Life Group "Let's Face It".
NOTE: Application for Second Life can be downloaded from http://secondlife.com. Personal avatar must be created to join group.

Ning: Facial Difference: http://facialdifference.ning.com/

Facebook: Let's Face It: http://groups.to/letsfaceit/ or http://www.facebook.com/group.php?gid=14635254465

Other Ning networks of possible interest:

- Epidermolysis Bullosa Awareness & News: http://ebnews.ning.com/

Other Facebook groups of possible interest:
- AboutFace
- All The Cool Kids Have Cleft Lip And Palate
- Alliance For Smiles Team Members
- Apert syndrome awareness
- Awareness of cleft lip and palate
- Behcets Disease Awareness
- The Birth Defect Appreciation Society
- Cleft Gang
- Cleft Lip & Palate Association of Ireland
- Cleft Lip & Palate Surgery for Kids in Need
- Cleft Lip and Palate
- Cranio Connect Ontario - Craniosynostosis
- Crouzon Syndrome
- Darren Agnew Cleft Pallet Society [sic]
- Deformed Orphans Relief Association of Yingshan County, Anhui, China
- Donations for CLAPA (Cleft Lip and Palate Association)
- Ectodermal Dysplasia
- Edmonton Cleft Lip & Palate Support Network
- Facing the World
- FDU Students for Operation Smile
- February 29th is Rare Disease Day
- Find A Cure for Epidermolysis Bullosa
- Friend of Interplast.Org
- Future Plastic Surgeons of America
- god's gifted children-apert and down syndrome
- Help Us Stop Sticklers Syndrome
- I love someone born with a cleft.(Lip or Palette) [sic]
- Join the cause: Help Us, Help Kids
- The Jorge Posada Foundation
- Kelleigh Gustafson Vascular Anomaly Awareness and Advocacy for Research
- Melrose High Operation Smile :o)
- One Charity. One Problem. One Goal. Smile Train.
- Operation Smile
- OPERATION SMILE =D
- Operation Smile ASFG
- Operation Smile HVHS!
- Operation Smile Ohio State Chapter
- Our Journey, Cleft Lip and Palate
- Parents of children with cleft lip or palete [sic]
- Pediatric Cranial Synostosis
- Pierre Robin Sequence
- Plagiocephaly Support Group
- Progeria
- Robinow Syndrome
- Rxcipes for Smiles - Charity Cookbook
- Saving the World One Smile at a Time (GO SMILE TRAIN!!)
- Smile Campaign
- SmileTrain
- TheSmileTrain.Org
- Smile Train
- The Smile Train: The World's Leading Cleft Charity
- Summit for Smiles
- Tiana's One smile page
- Stand Up and Smile
- Support for families of Cleft lip/ Palate childern in Ontario
- Supporting families who have children with Cleft Lip/Pallet [sic]
- Teens with a cleft lip/palate
- Tribute to Rare Diseases That People Know Too Little About
- Tuberous Sclerosis
- Velo Cardio Facial Syndrome
- We Love Our Cranio Babies!

... and more.

Posted by pfa at 09:27 AM | Comments (0)

May 08, 2008

LIVESTRONG Day Announcement

PRESS RELEASE
May 7, 2008
For Immediate Release
Contact:
Bradford Glazier, LIVESTRONG Day Event Organizer
302-547-1281
302-477-1118
glazi@msn.com

Katherine McLane, Lance Armstrong Foundation
512-279-8384
Katherine-dot-McLane at-sign livestrong-dot-org

Local Organizations Share Information on Livestrong Day in Delaware
Wilmington,DE - On Tuesday May 13, 2008, local Lance Armstrong Foundation Delegates invite you to share your cancer resources and information.

Join us from 11:30-1:30 in Rodney Square, Wilmington Delaware. Help build support and awareness by helping people with their goals to Livestrong.

The event includes a lunchtime concert from local band CODE BLUE.

The event is free and open to the public. All cancer organizations and services are invited to provide free information and support. Please turn up your computer volume and click the link below to more about the event.

If you have not already emailed your plans to attend, please let us know today. The event is informal. No tables or equipment is provided. However you are welcome to bring your own set-up and materials. The weather forecast for Tuesday is 62-67 degrees and Sunny!
RSVP to info at-sign can-connect.org.

Posted by pfa at 08:23 PM | 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 ...

================================

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)

March 13, 2007

Podcast Available: Betsy Wilson

We are delighted to make available the video and audio of Betsy's presentation here of October 2006. We also have posted the introductory comments, with our gratitude to those of you who contributed remarks.

You can find all this at:

Let's Face It: About Betsy Wilson:
http://www.dent.umich.edu/faceit/about/betsy.php

Posted by pfa at 10:21 AM | Comments (0)

December 07, 2006

Detroit Oral Cancer Project

Head and neck cancers are one of the major causes of facial difference.

"If my dentist had not diagnosed my cancer, I would likely be dead by now." That powerful comment is in a new video on a Web site as part of a comprehensive continuing dental education course dealing with oral cancer screening and prevention that is now offered online by the University of Michigan School of Dentistry.

Detroit Oral Cancer Project: www.detroitoralcancer.org

"African American men in Detroit have one of the highest rates of oral cancer in the nation. The goal of the Detroit Oral Cancer Prevention Project is to prevent deaths from oral cancer in the city of Detroit by increasing awareness and providing free screenings."

While the web site and information provided are targeted toward a specific audience, it is valuable for anyone.

Posted by pfa at 02:01 PM | Comments (0)

November 26, 2006

Heroes with a Thousand Faces

We received the following press release for this absolutely fascinating book, Heroes with a Thousand Faces. Some of the information and personalities presented in this new book are also highlighted in the musical Let's Face the Music previously profiled in an earlier blog entry.

==============================

Imagine if we had to wear our imperfections like labels on our faces every day, all the time – in photos, at formal events, interviewing for a job, and meeting someone for the first time. What if there were no hiding our imperfections? No doubt we would struggle with feeling self-conscious and we would constantly wonder how we were being judged by others.

In her book Heroes with a Thousand Faces, writer Laura Greenwald introduces us to people who were born with severe facial deformities or whose faces have been changed forever because of injury or disease. Their stories are at once heartbreaking and hopeful. They teach us all the definitions of patience and perseverance.

One young woman, Melissa, has undergone forty-two surgeries in nineteen years to try to correct issues affecting her face since birth. After surgeries, she refused to look in the mirror for days. “She wouldn’t look in the mirror,” her family says, “because she wouldn’t know who was going to be there.” Today, Melissa advocates for education and understanding for people with facial deformities. “I wish parents would educate their children that we’re not all the same. I wish parents would tell children what’s wrong and not just tell them not to stare.”

From a fascinating behind-the-scenes look at how prosthetic noses, acrylic eyes, and other replacement parts are made, to the headline-grabbing debates about facial transplantation, Laura Greenwald challenges her readers to look beyond physical appearances and to see the heroes within.

A portion of the author’s proceeds benefits programs to support people with facial differences.

Order Heroes with a Thousand Faces from BN.com or Amazon.com, or by contacting Strauss Consultants at 718.625.9382.

ABOUT THE AUTHOR: Laura Greenwald writes and edits medical publications. She is manager of physician and consumer communications for Cleveland Clinic.

Posted by pfa at 09:50 PM | Comments (0)

October 25, 2006

New Let's Face It Web Site is Live

The new and revised web site for Let's Face It has gone live to the public as of 12:27pm today. You may visit the new site to see what is different at:

Let's Face It: http://www.dent.umich.edu/faceit/

We will continue to develop the site and add new content. This represents our initial efforts to enrich on Betsy Wilson's wonderful efforts, and to expand the original Let's Face It site in some new directions.

My congratulations and thanks to all who worked so hard to make this possible!

Posted by pfa at 12:59 PM | Comments (0)

Update: American Academy of Maxillofacial Prosthetics

When we have updates or changes to our organizations list, we may not always be able to post those changes to the website immediately, but we will post those updates here.

---------------------------------------------

American Academy of Maxillofacial Prosthetics

"The Academy is devoted to the study and practice of methods used to habilitate esthetics and function of patients with acquired, congenital and developmental defects of the head and neck."

Dr. Steven P. Haug
Executive Secretary/Treasurer
1121 West Michigan Street
Indianapolis, IN 46202
Tel: 317-274-5571
Fax 317-278-2818
Email: sphaug@iupui.edu
Web: http://www.maxillofacialprosth.org/maxillo/maxillofacial/HomeContent.htm

Posted by pfa at 08:50 AM | Comments (0)

October 24, 2006

Betsy Wilson Speaks at UM this Friday

Just a reminder that this event is this week.

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. Betsy will be speaking from noon to 1pm at an event in Room G378 of the University of Michigan School of Dentistry. The event is open to the public. Light refreshments will be served.

The UM version of the site will be at:
http://www.dent.umich.edu/faceit/

Press Release:
Craniofacial Disfigurements Web Site to be Transferred to U-M -- "Let's Face It" Leader to Speak at Dental School Oct. 27
http://www.dent.umich.edu/about/aboutschool/news/news2006/news100406.html

Event Information and Poster:
Facing Life With a Different Face -- Betsy Wilson:
http://www.dent.umich.edu/faceit/FaceItPoster.pdf

Posted by pfa at 02:27 PM | Comments (0)

October 19, 2006

Introducing Let's Face It at UM

The University of Michigan is proud to announce that the Let's Face It web site is being transferred from the Let's Face It USA organization to UM this month. The Let's Face It web site provides information and resources for persons with facial differences, their friends and family, and clinicians. At the University of Michigan, we hope to enrich and expand the variety of clinical information and resources on the site.

Our Mission:
To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.

Our Vision:
To be recognized as a reputable source of information and resources that those with facial differences, those who care for them, and the general public can go to with confidence and a desire to learn.

The original "Let's Face It" web site has been at:
http://www.faceit.org/

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. The UM version of the site will be at:
http://www.dent.umich.edu/faceit/