Let's Face It

Registration is open! All registration is done by mail.

Registration packets for the Moebius Syndrome Foundation International Conference VIII have been mailed to those on the foundation's mailing list.

The registration packet is also available online at the Moebius Syndrome Foundation web site.

If you haven't received a packet, please visit the web site to read or download the packet online.

You can also visit the conference web site at www.MoebiusNJ.org.

Comedian David Roche Ready to Face Moebius Syndrome Attendees

David Roche book David Roche, a comedian and inspirational/educational speaker, will be the keynote speaker at the upcoming Moebius Syndrome Foundation International Conference VIII.

Roche authored the book, The Church of 80% Sincerity. In it, he writes, is the story of his "journey from shame to self-acceptance."

Visit David's Web site at: http://www.davidroche.com/.

David was profiled on CNN. Visit here to view the video clip: http://www.davidroche.com/CNN/

Saturday Night Live!

Moebius Syndrome Foundation International Conference VIII Let's go Moebians -- get your "act" together!

The Saturday night talent show at Moebius VIII is your time to showcase your talents. This first-ever Moebius Talent Show is at 7:30 pm on Saturday July 12. All conference attendees are welcome to participate. A CD player and simple keyboard are provided. You supply all other props.

Continue the fun at 8:30 pm by singing and dancing with the D.J. or take in David Roche's one-man show, The Church of 80% Sincerity.

Posted by pfa at 08:05 AM | Comments (0)

May 17, 2008

Facial Difference Google Group - Correction

Some folks have been having trouble joining the Facial Difference group in Google from the email invitation that was received. Here is another way to join.

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

Click on the link above and try to join from that page. If you have a Google GMail account, you will need to join with that account. If you do not, you would need to either use a Google account that does not have GMail or create a Google account based on another email address. I hope this works. Good luck, all!

Posted by pfa at 03:20 PM | Comments (0)

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)

May 07, 2008

New Children's Book on Cochlear Implants

My Hearing Loss and Me: We Get Along Most of the Time
by John F. Anderson, Jr.

What are the experiences of students with hearing loss attending regular schools? This book tells a story of a fictional young student through pictures and his experiences using a cochlear implant.

http://www.trafford.com/robots/03-0677.html

Posted by pfa at 09:02 PM | Comments (0)