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)

March 20, 2007

Slides about Let's Face It

Just another way to show you the slides I mentioned previously.

Posted by pfa at 10:31 AM | Comments (0)

January 27, 2007

Update: Food and Feeding

This is an update to:

Let's Face It: Lifestyle: Food and Feeding:
http://www.dent.umich.edu/faceit/lifestyle/food.php

Eating can be one of the most subtley pervasive concerns for persons with facial difference. Restaurants favored by friends may not have a single thing on the menu that you can consume. Running late in the morning? You can't count on being able to find something edible in the vending machine. If you are dependent on medical nutrition, boredom can set in quickly.

The resources below can help provide some variety and personal control in this sensitive area, and focus on finding recipes to enrich your choices. You'll quickly notice that many of these are not specifically related to facial difference, but rather may come from areas with a variety of concerns related to eating problems. Some may be from simple mouth tenderness after dental procedures, while others may come from patients with swallowing or chewing problems for a variety of reasons.

* RECIPE RESOURCES

Cathy's EC Cafe (Esophageal Cancer): http://www.eccafe.org/cnt/index.html

Dr. William Trepp, Orthodontic Specialist: Soothing Recipes: http://www.orthodontics.org/recipe.htm

Easy to Swallow:
http://www.easytoswallow.co.uk/

Eating to Win: A Collection of Recipes and Ideas from Esophageal Patients and Carers in the USA and the UK:
http://website.lineone.net/~brittan/Food/

Food Downunder: No Chew Food Recommendations: http://fooddownunder.com/cgi-bin/recipe.cgi?r=174798

Huntington's Disease Advocacy Center: Food Recipes for Those of Us with HD: Recipes:
http://www.hdac.org/recipe/recipes.php

Muscular Dystrophy Association: ALS Division: MEALS for Easy Swallowing:
http://www.als-mda.org/publications/meals/

Novartis Medical Nutrition: Dysphagia: Recipes: http://www.novartisnutrition.com/us/articleDetail?id=3734

TMJ Friends Message Board: Life: Nutrition, Recipes, Eating Concerns: Random Soft or No Chew Recipes: http://www.tmjfriends.com/forum/archive/index.php/t-860.html

University of Minnesota Extension Service: Resources for People on Special Diets: http://www.extension.umn.edu/distribution/nutrition/DJ3299.html

University of Pittsburgh Medical Center: Swallowing Disorders Center: Recipes to Increase Your Caloric Intake: http://swallowingdisorderscenter.upmc.com/Recipes.htm

UC Davis: Children's Hospital: Cleft and Craniofacial — postsurgical nutrition, Sample recipes: http://www.ucdmc.ucdavis.edu/children/services/cleft/health/postsurg/recipes.html


WANT MORE:

Google Search: recipes (craniofacial OR "no chew" OR swallowing OR dysphagia OR tmj OR esophageal OR oesophageal)

Posted by pfa at 11:04 AM | Comments (0)

December 20, 2006

Acoustic Neuroma Updates

Our condition page currently lists two organizations supporting patients with Acoustic Neuroma (also known as Vestibular Schwannoma).

Acoustic Neuroma Association: http://www.anausa.org

ANA/NJ - Acoustic Neuroma Association of New Jersey: http://www.ananj.org

To those, we'd like to add this one.

Acoustic Neuroma Association of Canada: http://www.anac.ca/en/

We'd also like to bring your attention to a few other resources on this topic.

From the US Government

MedlinePlus: Acoustic Neuroma: http://www.nlm.nih.gov/medlineplus/acousticneuroma.html

NIH: National Institute on Deafness and Other Communication Disorders (NIDCD): Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis: http://www.nidcd.nih.gov/health/hearing/acoustic_neuroma.asp


For Clinicians

Acoustic Neuroma (National Institutes of Health, Consensus Development Conference Statement; December 11-13, 1991): http://www.consensus.nih.gov/1991/1991AcousticNeuroma087html.htm

eMedicine: Skull Base, Acoustic Neuroma (Vestibular Schwannoma) / by Peter S. Roland: http://www.emedicine.com/ent/topic239.htm

JAMA & Archives: Topic Collection: Acoustic Neuroma: http://pubs.ama-assn.org/cgi/collection/acoustic_neuroma

Posted by pfa at 11:45 AM | Comments (0)