<?xml version="1.0" encoding="utf-8"?>
<feed version="0.3" xmlns="http://purl.org/atom/ns#" xmlns:dc="http://purl.org/dc/elements/1.1/" xml:lang="en-us">
<title>Let&apos;s Face It</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/" />
<modified>2009-04-16T19:42:00Z</modified>
<tagline>Information and resources, news and views about facial difference and craniofacial anomalies.</tagline>
<id>tag:mblog.lib.umich.edu,2009:/faceit/2806</id>
<generator url="http://www.movabletype.org/" version="3.17">Movable Type</generator>
<copyright>Copyright (c) 2009, pfa</copyright>
<entry>
<title>Special Olympics, Redux</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2009/04/special_olympic.html" />
<modified>2009-04-16T19:42:00Z</modified>
<issued>2009-04-16T19:37:45Z</issued>
<id>tag:mblog.lib.umich.edu,2009:/faceit/2806.50201</id>
<created>2009-04-16T19:37:45Z</created>
<summary type="text/plain">A few weeks ago there was a bunch of discussion about the verbal gaffe made by President Obama with respect to Special Olympics. I meant to blog about it at the time, but being really swamped didn&apos;t get to it....</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Miscellaneous</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>A few weeks ago there was a bunch of discussion about <a href="http://www.youtube.com/watch?v=GD0EcujFSn8">the verbal gaffe made by President Obama with respect to Special Olympics</a>. I meant to blog about it at the time, but being really swamped didn't get to it. Then I was phoned by the Special Olympics, which reminded me I hadn't done so, but I thought it was too late and no longer timely. Today I noticed a recent blogpost by Jim Tome about Special Olympics and their use of social media to campaign for more appropriate use of conversational language relative to persons with intellectual challenges or learning disabilities. </p>

<p>Tome, Jim. Special Olympics Targets “SM” in New Campaign. Organic Marketer, April 9, 2009. <a href="http://organicmarketer.wordpress.com/2009/04/09/special-olympics-targets-sm-in-new-campaign/#more-93">http://organicmarketer.wordpress.com/2009/04/09/special-olympics-targets-sm-in-new-campaign/#more-93</a></p>

<p>I still have my original draft of what I wanted to say, so am pulling it out, dusting it off, and hoping it is still relevant to our readership. </p>

<p>A big part of the discussion that flurried across the social media and my email lists was about what the original intent was in President Obama's statement, or whether it mattered. People were offended by the original statement, the idea that it might be funny, by the apology, the perceived intent, the explained intent, the implied intent, and more. Other people were defending him for the same statements. My own first and strongest reaction was, "Thank God I don't have a job like his where every word I say is looked at under a microscope." God alone knows how many times I've stuck my foot in my mouth saying something well-intentioned that was heard otherwise.</p>

<p>I am not so much concerned with what Obama said or why he said it as I am with the discussions that arose around the trigger event and the filters through which we listen. I want to share three of my own stories to illustrate this from different points of view. </p>

<p>There is an interesting chapter about this in a book I like. In <a href="http://www.readinggroupguides.com/guides_C/cloister_walk1.asp">Cloister Walk</a> by Katherine Norris, she mentions being in a small rural town in a social space where there is a young man who has never heard of homosexuality being "hit on" by another guy but not knowing it. She also mentions in the same book rural folk using language to describe African Americans that would pejorative in other places coming out of other mouths, but which was not remotely intended as such. She talked about how utterly baffled and bewildered the young man was when someone tried to explain this to him, and how the good heart is sometimes hidden by these types of gaffes. So part of the problem becomes not how the other speaks, but how we listen.</p>

<p>When I was a child, the very first African American family in our town moved in across the street from my family. We had never seen anyone with skin like that before, and thought it was really pretty. One of my siblings, younger than school age, told the little girl that her skin looked like a Hershey bar. He meant nothing by it other than the literal meaning he said. Her parents were so deeply offended than no one in our family was ever allowed to play with their children again, and they moved away as quickly as they could resell their home. I was too young myself to understand what was happening - probably around age 8? - but it hurt, and has bugged me my entire life.</p>

<p>Recently I stumbled into a previously undiscovered online public forum from my hometown. The top discussion link was for a conversation about "the crazy man who wears a skirt." As an active advocate for and ally of the LGBT community in general and the transgendered community in particular, with multiple relatives among LGBT folk, I was aghast at the title. I skimmed the beginning and end of the over two dozen web pages of discussion engendered by this topic. The discussion seemed to focus on psychoanalyzing the man, with the basic tenet held to be that he was either crazy or transgendered and therefore crazy, with a strong preference from many of the speakers that the man just go away because he is someone they would rather not see. LGBT teens have, I believe, either the highest or near highest rate of suicide for any population in the country. I can only imagine the impact of more than 24 pages of active ongoing public discussion about the reaction to this person simply walking down the street. I am looking for the teaching moment, and struggling to find a way to join the discussion, but at this moment I am deeply saddened and a bit ashamed for my home.</p>

<p>Here, I work with Let's Face It, an organization that supports persons with facial difference.  Our slogan is "To support a person with facial difference, look them in the eyes and smile at them." I think that works in a lot of places, for people with a lot of different types of special needs and abilities. I have tried to take that to heart. </p>

<p>Once I was walking to the bus after work. From a block away I saw this young man notice a young woman standing at the stop. She was very slender with  this absolutely stunning thick gorgeous tawny mane of honey gold hair. He got this little swagger in his step, an intent look in his eyes, and strolled up to her. Clearly he was intending to, um, try to get to know her a little better, shall we say? I was too far away to hear what he said, but I could see his reaction when she turned around. (She had hemifacial microsomia.) He jumped as if he'd received an electric shock, then literally ran away, past the end of the block, into the street. A couple times he turned and started back to the bus stop, but he started shaking uncontrollably, and instead turned away, hunched over himself and waited in the street until after she had boarded the bus, at which point he made a frantic dash to catch the bus before it left. Meanwhile, I walked up to the young woman, smiled at her and cheerfully said, "That's a lovely bag. Did you do the quilting on it?" and we talked about quilting for a while. She told me that she would get her parking pass in 2 days and then would never ride the bus again. </p>

<p>What makes me most sad about this story is the way <b>both</b> of them were clearly hurt and hurting. Yes, it is tempting to want to blame the young man, but he was hurting also, although I certainly wish that he was made of sterner stuff and had been taught somewhere along the line to look beyond appearance. I hope that he later looked back and this and wished that he had been less hurtful to the young woman. </p>

<p>I very much like what one woman on an email group said about "take ownership of stereotypical terminology." I tend to espouse the "walk a mile in another persons shoes" approach. I ask my kids to imagine what life is like for the person. Once they realize that they don't know enough to do this, I will help them find stories or videos, or share stories of people I know, or use my imagination to help them along. I often find, like Katherine Norris did, that the hurtful comment made by an adult will have come from ignorance without any intent to cause harm. They simply don't know enough about the person or people to imagine the effect of the comment. I try to not blame the person and assume ignorance. I ask a lot of "what if" questions. What if the person is mentally ill? What if the person is transgendered? What is their life like? What can they not do that you can? How does this make their life easier or harder? How do you think they would feel about [blank]?</p>

<p>So, yes, incidents like this can be disturbing, or hurtful, or heart wrenching, but I think we who have had reason to learn why and how to be more sensitive need to use that to help others learn, not to create a blaming environment. At the same time, we need safe spaces like our support groups and email groups to say, "Yes, that hurt." So now, how do we go back out into the world to make this a learning experience?<br />
</p>]]>

</content>
</entry>
<entry>
<title>Today is Rare Disease Day 2009 </title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2009/02/today_is_rare_d.html" />
<modified>2009-02-28T18:26:23Z</modified>
<issued>2009-02-28T17:47:15Z</issued>
<id>tag:mblog.lib.umich.edu,2009:/faceit/2806.49328</id>
<created>2009-02-28T17:47:15Z</created>
<summary type="text/plain">Today is Rare Disease Day. Rare Disease Day: rarediseaseday.org/ I blogged elsewhere a couple weeks ago about how in working with the health system you do NOT want to be an outlier ( Life Outside the Bell Curve, a.k.a. The...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Events</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>Today is Rare Disease Day. </p>

<p>Rare Disease Day: <a href=http://rarediseaseday.org/">rarediseaseday.org/</a><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316932124/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3466/3316932124_de247172a4.jpg" width="500" height="330" alt="Rare Disease Day 2009" /></a></p>

<p>I blogged elsewhere a couple weeks ago about how in working with the health system you do NOT want to be an outlier (<a href="http://healthscienceandlibraries.info/2009/01/life-outside-the-bell-curve-aka-the-limitations-of-the-evidence-base/"> Life Outside the Bell Curve, a.k.a. The Limitations of the Evidence Base</a>). I should have added you don't want to be interesting either. People with rare conditions are both. This often means that both they have no strong voice in developing and implementing healthcare systems and policies, and also that the typical healthcare provider isn't likely to have a strong sense of how best to help.</p>

<p>Rare Disease Day is designed to help promote both these concerns and find solutions. As the image above says:<br />
 - Strengthen one voice of patients<br />
 - Give hope and information to patients<br />
 - Bring stakeholders closer together<br />
 - Coordinate policy actions in different countries<br />
 - Get equity in access to care and treatment.</p>

<p>Here in the United States, your best connection to this initiative is through NORD.</p>

<p>National Organization for Rare Disorders: <a href="http://www.rarediseases.org/">rarediseases.org</a></p>

<p><a href="http://www.flickr.com/photos/rosefirerising/3316972278/" title="Rare Disease Day - NORD by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3315/3316972278_51a6397dec.jpg" width="500" height="322" alt="Rare Disease Day - NORD" /></a></p>

<p>So what can you do? Tell people. Now, today, tomorrow, whenever. There will be another one next year, if you miss today. Just get the word out. Here are some ways you can join in with the activities going on.</p>

<p><b>Join the Facebook group.</b><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316105147/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3454/3316105147_111d185631_m.jpg" width="240" height="186" alt="Rare Disease Day 2009" /></a></p>

<p><b>Set your Facebook status to tell folks.</b><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316931484/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3620/3316931484_1956b687b3_o.png" width="536" height="190" alt="Rare Disease Day 2009" /></a></p>

<p><b>Contribute photos to the Flickr group.</b><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316107083/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3326/3316107083_1189d9ebf1.jpg" width="500" height="297" alt="Rare Disease Day 2009" /></a></p>

<p><b>Follow them on Twitter.</b><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316933820/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3565/3316933820_a3f055707e_m.jpg" width="240" height="187" alt="Rare Disease Day 2009" /></a></p>

<p><b>Tell folks on Twitter.</b><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316172377/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3409/3316172377_4d6289e500_m.jpg" width="240" height="145" alt="Rare Disease Day 2009" /></a></p>

<p><b>Go to their YouTube channel. Subscribe, and watch some videos.</b><br />
<a href="http://www.flickr.com/photos/rosefirerising/3316933056/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3529/3316933056_8977cb51a9.jpg" width="500" height="316" alt="Rare Disease Day 2009" /></a></p>

<p><b>Read the book.</b></p>

<p>The Voice of 12,000 Patients: <a href="http://eurordiscarebook.eurordis.org/">http://eurordiscarebook.eurordis.org/</a></p>

<p><a href="http://www.flickr.com/photos/rosefirerising/3316935208/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3619/3316935208_167e57018f_m.jpg" width="174" height="240" alt="Rare Disease Day 2009" /></a> <a href="http://www.flickr.com/photos/rosefirerising/3316934930/" title="Rare Disease Day 2009 by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3297/3316934930_270a1b836c_m.jpg" width="167" height="240" alt="Rare Disease Day 2009" /></a></p>

<p>Bottom line? <b>Tell someone. </b></p>]]>

</content>
</entry>
<entry>
<title>More No-Chew Recipe Sources</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2009/02/more_no-chew_re.html" />
<modified>2009-02-10T20:08:42Z</modified>
<issued>2009-02-10T19:23:48Z</issued>
<id>tag:mblog.lib.umich.edu,2009:/faceit/2806.48997</id>
<created>2009-02-10T19:23:48Z</created>
<summary type="text/plain">In our January 27, 2007 blogpost, Update: Food and Feeding, we listed a number of fine resources for recipes that are either easy to swallow or no-chew. That was (and this is) an update to: Let&apos;s Face It: Lifestyle: Food...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Tools</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>In our January 27, 2007 blogpost, <a href="http://mblog.lib.umich.edu/faceit/archives/2007/01/index.html">Update: Food and Feeding</a>, we listed a number of fine resources for recipes that are either easy to swallow or no-chew. </p>

<p>That was (and this is) an update to:</p>

<p>Let's Face It: Lifestyle: Food and Feeding: <br />
<a href="http://www.dent.umich.edu/faceit/lifestyle/food.php">http://www.dent.umich.edu/faceit/lifestyle/food.php</a></p>

<p>We were inspired to prepare an exhibit of some of the marvelous no-chew cookbooks available at that time in the Dentistry Library and now available in the Health Sciences Libraries. Selected images from the exhibit are available here.</p>

<p>I Chew, You Chew, No Chew: <a href="http://www.flickr.com/photos/rosefirerising/sets/72157594547459105/">http://www.flickr.com/photos/rosefirerising/sets/72157594547459105/</a></p>

<p><a href="http://www.flickr.com/photos/rosefirerising/397090668/" title="Cuisine Après Dentist by rosefirerising, on Flickr"><img src="http://farm1.static.flickr.com/147/397090668_89b48b450c_m.jpg" width="240" height="180" alt="Cuisine Après Dentist" /></a> <a href="http://www.flickr.com/photos/rosefirerising/397094952/" title="The I Hate to Chew Cookbook by rosefirerising, on Flickr"><img src="http://farm1.static.flickr.com/179/397094952_452366217c_m.jpg" width="180" height="240" alt="The I Hate to Chew Cookbook" /></a><br />
<a href="http://www.flickr.com/photos/rosefirerising/397092055/" title="Blend &amp; Mend by rosefirerising, on Flickr"><img src="http://farm1.static.flickr.com/188/397092055_874c3a8ee1_m.jpg" width="180" height="240" alt="Blend &amp; Mend" /></a> <a href="http://www.flickr.com/photos/rosefirerising/397097532/" title="Nutrition and Eating Problems of Oral and Head-Neck Surgeries by rosefirerising, on Flickr"><img src="http://farm1.static.flickr.com/125/397097532_53c0b8b902_m.jpg" width="240" height="180" alt="Nutrition and Eating Problems of Oral and Head-Neck Surgeries" /></a></p>

<p>Since those earlier pieces, more resources have become available. We are delighted to bring to your attention the following (and remember to check with your doctor or dietician if you have any question whether these are appropriate for you personally, since everyone's needs are slightly different).</p>

<p>Colitis Cookbook: <a href="http://www.colitiscookbook.com/">http://www.colitiscookbook.com/</a></p>

<p>Elayne Achilles' Dysphagia Cookbook.<br />
Cookbook: <a href="http://www.dysphagiacookbook.com/index.htm">http://www.dysphagiacookbook.com/</a><br />
Recipes: <a href="http://www.dysphagiacookbook.com/recipes.htm">http://www.dysphagiacookbook.com/recipes.htm</a></p>

<p>Food Down Under: No Chew Food Recommendations: <a href="http://www.fooddownunder.com/cgi-bin/recipe.cgi?r=174798">http://www.fooddownunder.com/cgi-bin/recipe.cgi?r=174798</a></p>

<p>Taste of Home: Community: Got Any Good Soft "No Chew" Recipes?: <a href="http://community.tasteofhome.com/forums/t/274657.aspx?PageIndex=1">http://community.tasteofhome.com/forums/t/274657.aspx?PageIndex=1</a><br />
(COMMENT: This forum entry has 55 response, and starts to get really useful on the 3rd and 4th pages.)</p>

<p>Today's Caregiver: Six New Items on the Menu for a Liquid Diet: <a href="http://www.caregiver.com/articles/general/six_new_items.htm">http://www.caregiver.com/articles/general/six_new_items.htm</a></p>

<p>Wide Smiles: Liquid Recipes for After Surgery: <a href="http://www.widesmiles.org/cleftlinks/WS-414.html">http://www.widesmiles.org/cleftlinks/WS-414.html</a><br />
</p>]]>

</content>
</entry>
<entry>
<title>Children and Clinical Trials</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/11/children_and_cl.html" />
<modified>2008-11-06T16:05:16Z</modified>
<issued>2008-11-06T16:01:03Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.45522</id>
<created>2008-11-06T16:01:03Z</created>
<summary type="text/plain">I was delighted to hear about this new resource for children and parents about the issues, concerns, and importance of participating in clinical trials to help determine what is truly safe treatment for children. The idea that it is important...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>News</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>I was delighted to hear about this new resource for children and parents about the issues, concerns, and importance of participating in clinical trials to help determine what is truly safe treatment for children. The idea that it is important to go beyond simply reducing dosage according to weight, and to assess the true impact of differences in children's minds and bodies is one that has been recognized for a long time but reaches new prominence and authority with this endorsement from our government. Bravo!</p>

<p>Children and Clinical Trials: <a href="http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php">http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php</a></p>

<p><a href="http://www.flickr.com/photos/rosefirerising/3007306543/" title="Children &amp; Clinical Trials by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3194/3007306543_e335442350.jpg" width="500" height="293" alt="Children &amp; Clinical Trials" /></a></p>

<p>"Children have often had to accept medicines and treatments based on what is known to work in adults. As a society, we should not agree to this "hand-me-down" approach. Many efforts are being made to provide proper research for children, to find the best treatments, drugs, and devices for them.</p>

<p>Research in children has helped to save lives and improve health. Children no longer suffer from many common childhood diseases like polio, measles or the flu as they did in the past. Therapy for childhood cancers and premature babies has improved survival and quality of life for children.</p>

<p>You may be wondering what clinical research is. This is the way that drugs, devices or other treatments like behavior therapy are tested in humans to see if they are safe and effective. This site will help you to find out about clinical research in children...no more hand-me-down research."</p>]]>

</content>
</entry>
<entry>
<title>Social Networking for TMJ</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/10/social_networki_1.html" />
<modified>2008-11-06T16:27:56Z</modified>
<issued>2008-10-26T16:06:46Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.45529</id>
<created>2008-10-26T16:06:46Z</created>
<summary type="text/plain">The TMJ Association is branching out and reaching out. They have started to embrace the use of social media to create safe spaces for their community to share information, problems, and solutions. TMJ Association: TMJ Forum: http://forum.tmj.org/ As more facial...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Organizations</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>The TMJ Association is branching out and reaching out. They have started to embrace the use of social media to create safe spaces for their community to share information, problems, and solutions. </p>

<p><a href="http://www.flickr.com/photos/rosefirerising/3007550957/" title="TMJ Forum by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3198/3007550957_71e4ddc70d.jpg" width="500" height="335" alt="TMJ Forum" /></a></p>

<p>TMJ Association: TMJ Forum: <a href="http://forum.tmj.org/">http://forum.tmj.org/</a></p>

<p>As more facial difference organizations are using social technologies, you can see some similar problems and concerns repeated across these spaces. Consider joining other groups to share information and solutions. There is a substantial list available in <a href="http://mblog.lib.umich.edu/faceit/archives/2008/05/social_networki.html">our earlier blog post on facial difference social networking</a>.</p>]]>

</content>
</entry>
<entry>
<title>H.R. 2820: Reconstructive Surgery Act of 2007</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/09/hr_2820_reconst.html" />
<modified>2008-10-23T16:39:59Z</modified>
<issued>2008-09-23T15:50:23Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.44974</id>
<created>2008-09-23T15:50:23Z</created>
<summary type="text/plain">Many of the readers of this blog have probably already heard about the Reconstructive Surgery Act of 2007. H.R. 2820: Reconstructive Surgery Act of 2007 (GovTrack.us): www.govtrack.us/congress/bill.xpd?bill=h110-282 As described by the Congressional Research Service: &quot;Amends the Public Health Service Act...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>News</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>Many of the readers of this blog have probably already heard about the Reconstructive Surgery Act of 2007. </p>

<p>H.R. 2820: Reconstructive Surgery Act of 2007 (GovTrack.us): <a href="http://www.govtrack.us/congress/bill.xpd?bill=h110-282">www.govtrack.us/congress/bill.xpd?bill=h110-282</a></p>

<p>As described by the Congressional Research Service: "Amends the Public Health Service Act and the Employee Retirement Income Security Act of 1974 (ERISA) to require a group health plan that provide coverage for surgery to also cover reconstructive surgery, including medically-necessary treatment for preoperative and postoperative care. Defines "reconstructive surgery" as any medically necessary and appropriate surgery performed to correct or repair abnormal structures of the body caused by congenital defects, developmental abnormalities, trauma, infection, tumors, or disease to: (1) improve functions; or (2) give the patient a normal appearance. "</p>

<p>As you can see, much of the terminology is vague, probably intentionally so, to allow evolution of the specific interpretation. Still, it is no surprise that this is generating a vast amount of discussion among the  facial difference communities.</p>

<p>The main supporting group is:</p>

<p>Association of Independent Craniofacial Advocates (AICA): <a href="http://www.aica-advocates.blogspot.com/">http://www.aica-advocates.blogspot.com/</a></p>

<p>They are seeking 10,000 signatures on a  petition in support of the proposed legislation.</p>

<p>Care 2: The Petition Site: Support for HR2820 - The Reconstructive Surgery Act: <a href="http://www.thepetitionsite.com/1/craniofacial">http://www.thepetitionsite.com/1/craniofacial</a></p>

<p>Whether you sign or not, simply reading the comments at the bottom is an education into the many facets of this complex issue.</p>

<p>For more information, here is a Google search.</p>

<p>Google Search: hr2820 OR "hr 2820" OR ("house of representatives" 2820 reconstructive) OR "reconstructive surgery act": <a href="http://www.google.com/search?hl=en&rlz=1G1GGLQ_ENUS284&q=hr2820+OR+%22hr+2820%22+OR+%28%22house+of+representatives%22+2820+reconstructive%29+OR+%22reconstructive+surgery+act%22&btnG=Search">http://tinyurl.com/6djz9c</a></p>]]>

</content>
</entry>
<entry>
<title>From Betsy - Hope, The Cancer Chain</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/08/betsy_liked_hop.html" />
<modified>2008-08-13T21:07:22Z</modified>
<issued>2008-08-13T20:53:18Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.42858</id>
<created>2008-08-13T20:53:18Z</created>
<summary type="text/plain">A recent letter from Betsy brought to my attention the following book by Brad O&apos;Neill, an oral cancer survivor. O&apos;Neill, Brad. Hope, the Cancer Chain. Blaine, WA: TheCancerChain, 2008. The following snippet is from the newspaper clipping sent by Betsy....</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Books</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>A recent letter from Betsy brought to my attention the following book by Brad O'Neill, an oral cancer survivor.</p>

<p>O'Neill, Brad. <a href="http://thecancerchain.com/">Hope, the Cancer Chain</a>. Blaine, WA: TheCancerChain, 2008. <br />
<a href="http://www.flickr.com/photos/rosefirerising/2760888832/" title="TheCancerChain.com by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3142/2760888832_22a132a015.jpg" width="500" height="382" alt="TheCancerChain.com" /></a></p>

<p>The following snippet is from the newspaper clipping sent by Betsy.</p>

<p>"A friend who heard about O'Neill's plight knew someone else with cancer who removed a link from a paper chain to count down treatment sessions. The O'Neills liked the idea, and Diane expanded it to include a message of support on each link." </p>

<p>The messages of support were donated by friends and family, and the story is truly a wonderful tale of the outpouring of generosity, caring and support that can nurture someone through a time of personal trial. </p>

<p><br />
</p>]]>

</content>
</entry>
<entry>
<title>I-Face - A Social Network for Teens with Facial Difference</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/06/i-face_-_a_soci.html" />
<modified>2008-06-21T20:53:58Z</modified>
<issued>2008-06-22T20:39:30Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.42167</id>
<created>2008-06-22T20:39:30Z</created>
<summary type="text/plain">From the Changing Faces group, there is a new social network for adolescents aged 11-21. iFace: http://www.iface.org.uk/docs/index.php &quot;Changing Faces - changing the way you face disfigurement&quot; They have a significant presence in a variety of teen-oriented social networking spaces with...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>News</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>From the Changing Faces group, there is a new social network for adolescents aged 11-21.</p>

<p>iFace: <a href="http://www.iface.org.uk/docs/index.php">http://www.iface.org.uk/docs/index.php</a><br />
"Changing Faces - changing the way you face disfigurement"</p>

<p><a href="http://www.flickr.com/photos/rosefirerising/2598687420/" title="iFace by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3135/2598687420_90eb9e9d70.jpg" width="500" height="319" alt="iFace" /></a></p>

<p>They have a significant presence in a variety of teen-oriented social networking spaces with what appears to be an active community and good moderation and etiquette guidelines. Here are some of the other places they are present:</p>

<p>Bebo: <a href="http://www.bebo.com/ChangingF">www.bebo.com/ChangingF</a></p>

<p>Changing Faces: <a href="http://www.changingfaces.org.uk">www.changingfaces.org.uk</a></p>

<p>MySpace: <a href="http://www.myspace.com/changingfaces_uk">www.myspace.com/changingfaces_uk</a></p>

<p>Show Your Face: <a href="http://www.changingfaces.org.uk/showyourface/">www.changingfaces.org.uk/showyourface/</a></p>

<p>There4Me: <a href="http://www.there4me.com">www.there4me.com</a></p>]]>

</content>
</entry>
<entry>
<title>Changing Faces - New Facial Difference Organization in UK</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/06/changing_faces.html" />
<modified>2008-06-21T20:54:59Z</modified>
<issued>2008-06-21T20:27:10Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.42166</id>
<created>2008-06-21T20:27:10Z</created>
<summary type="text/plain">Changing Faces ( http://www.changingfaces.org.uk/Home ) &quot;is a national charity based in the UK that supports and represents people who have disfigurements of the face or body from any cause.&quot; Their focus is on acceptance and psychosocial support. Their web site...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Organizations</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>Changing Faces ( <a href="http://www.changingfaces.org.uk/Home">http://www.changingfaces.org.uk/Home</a> ) "is a national charity based in the UK that supports and represents people who have disfigurements of the face or body from any cause."</p>

<p><a href="http://www.flickr.com/photos/rosefirerising/2598687730/" title="Changing Faces by rosefirerising, on Flickr"><img src="http://farm4.static.flickr.com/3259/2598687730_ca6aa41682.jpg" width="500" height="332" alt="Changing Faces" /></a></p>

<p>Their focus is on acceptance and psychosocial support. Their web site has a good resource list for the United Kingdom, information resources for key areas, and they provide personal support in a variety of areas. They have a very interesting resource for journalists about appropriate ways to discuss facial difference in the news - a resource that is perhaps long overdue!</p>

<p>Here is a new article discussion the true love story that lead to the founding of the organization.</p>

<p>Rankin, David. Challenging views on facial disfigurement: <a href="http://www.epsomguardian.co.uk/news/topstories/display.var.2296586.0.challenging_views_on_facial_disfigurement.php">http://www.epsomguardian.co.uk/news/topstories/display.var.2296586.0.challenging_views_on_facial_disfigurement.php</a></p>

<p>"I got to the stage where I trusted her and thought she was a bit different. I remember I asked her what do you focus on? Is it looks or the heart?' and she said It's the mind'."</p>

<p><br />
</p>]]>

</content>
</entry>
<entry>
<title>Facial Difference in the News</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/06/facial_differen_1.html" />
<modified>2008-06-21T20:26:13Z</modified>
<issued>2008-06-20T20:25:38Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.42164</id>
<created>2008-06-20T20:25:38Z</created>
<summary type="text/plain">In other blogs, I have found tracking and reporting on the news a way to keep information flowing. In this blog, I find I am routinely disheartened by how facial difference is reported in the media. I will go look...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>News</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>In other blogs, I have found tracking and reporting on the news a way to keep information flowing. In this blog, I find I am routinely disheartened by how facial difference is reported in the media. I will go look at the news, track it, find nothing I would care to repeat, or news items that would (rightly) cause dismay and concern among the readers of this blog. </p>

<p>Today I was struck by two articles and how different they were. These are just examples, each at one end of the spectrum, illustrating the range of perspectives on this topic.</p>

<p>ARTICLE #1:<br />
How disfigured Cody Hall got back her smile: <a href="http://www.telegraph.co.uk/news/uknews/2039134/How-disfigured-Cody-Hall-got-back-her-smile.html">http://www.telegraph.co.uk/news/uknews/2039134/How-disfigured-Cody-Hall-got-back-her-smile.html</a></p>

<p>"Cody's mother, Theresa, 43, said: 'We want to be able to show people how she has turned out and just how great she looks.' ... Cody said she is keen to have more laser surgery but wants to finish with the operations when she turns 18. She said: 'By the time I am 18, I don't think I want any more. Then I'm an adult and I want to do something else and move on.' "</p>

<p>ARTICLE #2: <br />
Camp Face Opens For Kids With Facial Differences: <a href="http://wjz.com/seenon/camp.face.2.736039.html">http://wjz.com/seenon/camp.face.2.736039.html</a></p>

<p>"While we can do surgery and try to help the children, the important thing is how they deal with it internally," said Kolk. Camp Face does this by allowing the children to interact with others who are dealing with the same issue. ...  "Camp Face helps build their confidence by letting them be themselves," said Summe.</p>

<p><br />
</p>]]>

</content>
</entry>
<entry>
<title>The Face -- International Somatechnics Conference: The Technologisation of Bodies and Selves</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/06/the_face_--_int.html" />
<modified>2009-05-14T23:12:44Z</modified>
<issued>2008-06-02T12:46:27Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.41838</id>
<created>2008-06-02T12:46:27Z</created>
<summary type="text/plain">CALL FOR PAPERS for panel on &apos;the face&apos; to be included in the program of: The Fifth International Somatechnics Conference: The Technologisation of Bodies and Selves to be held in Sydney, Australia, on April 16th-18th 2009 Abstracts should be 300-500...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Announcements</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>CALL FOR PAPERS for panel on 'the face' to be included in the program of:</p>

<p><b>The Fifth International Somatechnics Conference: The Technologisation of Bodies and Selves</b></p>

<p>to be held in Sydney, Australia, on April 16th-18th 2009</p>

<p>Abstracts should be 300-500 words and should be forwarded to Prof Nikki Sullivan at the address listed below. Proposals for panels and for performance pieces are welcome.</p>

<p>"Somatechnics" is a recently coined term used to highlight the inextricability of soma and techné, of the body (as a culturally intelligible construct) and the techniques (dispositifs and ‘hard technologies’) in and through which bodies are formed and transformed. This term, then, supplants the logic of the ‘and’, indicating that technés are not something we add to or apply to the body, but rather, are the means in and through which bodies are constituted, positioned, and lived.  As such, the term reflects contemporary understandings of the body as the incarnation or materialization of historically and culturally specific discourses and practices. </p>

<p>Deadline for abstracts: November 30th 2008</p>

<p>Keynote Speakers include: <br />
Claudia Castaneda (Brandeis University)<br />
Nichola Rumsey (University of the West of England)<br />
Jennifer Terry (University of California, Irvine)</p>

<p>Further information:<br />
The Somatechnics Conference Committee<br />
Somatechnics Research Centre<br />
Division of Society, Media, Culture and Philosophy<br />
Macquarie University<br />
North Ryde<br />
New South Wales 2109<br />
Australia</p>

<p>Email: nikki.sullivan at scmp.mq.edu.au  or somatechnicsadmin at gmail.com</p>

<p>Somatechnics Research Centre Website: <a href="http://www.somatechnics.mq.edu.au">http://www.somatechnics.mq.edu.au</a></p>

<p>Please circulate this CFP to colleagues who may be interested<br />
</p>]]>

</content>
</entry>
<entry>
<title>Moebius Syndrome Foundation International Conference VIII</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/05/moebius_syndrom.html" />
<modified>2008-06-02T13:12:06Z</modified>
<issued>2008-05-29T13:05:28Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.41841</id>
<created>2008-05-29T13:05:28Z</created>
<summary type="text/plain">Moebius Syndrome Foundation International Conference VIII Moebius Syndrome Conference: www.MoebiusNJ.org International Conference VIII * How to Register for the Moebius Syndrome Conference * Comedian David Roche Ready to Face Moebius Syndrome Attendees * Book Your Hotel Rooms, and Make Your...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Announcements</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>Moebius Syndrome Foundation International Conference VIII<br />
Moebius Syndrome Conference: <a href="http://www.MoebiusNJ.org">www.MoebiusNJ.org</a></p>

<p>International Conference VIII</p>

<p>* How to Register for the Moebius Syndrome Conference<br />
* Comedian David Roche Ready to Face Moebius Syndrome Attendees<br />
* Book Your Hotel Rooms, and Make Your Travel Arrangements<br />
* Saturday Night Live!</p>

<p><b>Greetings!</b></p>

<p>Did you register for Moebius Syndrome Foundation International Conference VIII?</p>

<p>Only a month is left before the Moebius Syndrome Foundation's International Conference VIII! Lots of things are happening! The list of speakers is growing. The hotel rooms are being booked. The DJ is getting his playlist ready.</p>

<p>Register today. Use the registration packet available online at the Moebius Syndrome Foundation web site.</p>

<p>Where: Parsippany, New Jersey, USA<br />
When: July 11-13, 2008</p>

<p><b>How to Register for the Moebius Syndrome Conference</a></p>

<p>Registration is open! All registration is done by mail.</p>

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

<p>The registration packet is also available online at the Moebius Syndrome Foundation web site.</p>

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

<p>You can also visit the conference web site at <a href="http://www.MoebiusNJ.org">www.MoebiusNJ.org</a>.</p>

<p><b>Comedian David Roche Ready to Face Moebius Syndrome Attendees</b></p>

<p>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.</p>

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

<p>Visit David's Web site at: <A href="http://www.davidroche.com">http://www.davidroche.com/</a>.</p>

<p>David was profiled on CNN. Visit here to view the video clip: <a href="http://www.davidroche.com/CNN/">http://www.davidroche.com/CNN/</a></p>

<p><b>Saturday Night Live!</b></p>

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

<p>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.</p>

<p>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.<br />
</p>]]>

</content>
</entry>
<entry>
<title>Facial Difference Google Group - Correction</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/05/facial_differen.html" />
<modified>2008-05-17T20:24:05Z</modified>
<issued>2008-05-17T20:20:57Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.41672</id>
<created>2008-05-17T20:20:57Z</created>
<summary type="text/plain">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...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>About Let&apos;s Face It</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>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.</p>

<p>Google: Groups: Facial Difference: <a href="http://groups.google.com/group/facialdifference">http://groups.google.com/group/facialdifference</a></p>

<p>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!<br />
</p>]]>

</content>
</entry>
<entry>
<title>Social Networking for the Facial Difference Community</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/05/social_networki.html" />
<modified>2008-05-12T15:40:49Z</modified>
<issued>2008-05-12T14:27:05Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.41383</id>
<created>2008-05-12T14:27:05Z</created>
<summary type="text/plain">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...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>About Let&apos;s Face It</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en-us" xml:base="http://mblog.lib.umich.edu/faceit/">
<![CDATA[<p>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. </p>

<p>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. </p>

<p>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.</p>

<p>"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."</p>

<p>Google Groups: Facial Difference email group: <a href="http://www.google.com/groups/facialdifference/">http://www.google.com/groups/facialdifference/</a></p>

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

<p>Ning: Facial Difference: <a href="http://facialdifference.ning.com/">http://facialdifference.ning.com/</a></p>

<p>Facebook: Let's Face It: <a href="http://groups.to/letsfaceit/">http://groups.to/letsfaceit/</a> or <a href="http://www.facebook.com/group.php?gid=14635254465">http://www.facebook.com/group.php?gid=14635254465</a></p>

<p>Other Ning networks of possible interest:</p>

<p> - Epidermolysis Bullosa Awareness & News: <a href="http://ebnews.ning.com/">http://ebnews.ning.com/</a></p>

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

<p>... and more.<br />
</p>]]>

</content>
</entry>
<entry>
<title>LIVESTRONG Day Announcement</title>
<link rel="alternate" type="text/html" href="http://mblog.lib.umich.edu/faceit/archives/2008/05/livestrong_day.html" />
<modified>2008-05-13T01:26:21Z</modified>
<issued>2008-05-09T01:23:32Z</issued>
<id>tag:mblog.lib.umich.edu,2008:/faceit/2806.41579</id>
<created>2008-05-09T01:23:32Z</created>
<summary type="text/plain">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...</summary>
<author>
<name>pfa</name>
<url>web page</url>
<email>pfa@umich.edu</email>
</author>
<dc:subject>Announcements</dc:subject>
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<![CDATA[<p>PRESS RELEASE<br />
May 7, 2008<br />
For Immediate Release<br />
Contact:<br />
Bradford Glazier, LIVESTRONG Day Event Organizer <br />
302-547-1281<br />
302-477-1118<br />
glazi@msn.com</p>

<p>Katherine McLane, Lance Armstrong Foundation<br />
512-279-8384<br />
Katherine-dot-McLane at-sign livestrong-dot-org </p>

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

<p>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.</p>

<p>The event includes a lunchtime concert from local band CODE BLUE.<br />
 <br />
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. </p>

<p>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!<br />
RSVP to  <b>info at-sign can-connect.org</b>.</p>]]>

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