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February 13, 2007
Moebius Syndrome Foundation Announces First Ever Research Conference
With tenacity, initiative and in keeping with the goal of finding the cause of a mysterious neurological condition which leaves people unable to smile from birth, the Moebius Syndrome Foundation is pleased to announce its first research conference to be held in Bethesda, MD April 24 & 25, 2007. Read Press Release>>>
January 18, 2007
Ron Strauss, DMD, PhD and Cindi Broaddus Headline 2007 North American Craniofacial Family Conference
Dental Friends Distinguished Professor and Chair of the Department of Dental Ecology at the University of North Carolina School of Dentistry, Professor of Social Medicine Ron Strauss, DMD, PhD will present Only Skin Deep: Quality of Life, Stigma and Facial Appearance, A New Paradigm for Thinking about Children with Craniofacial Conditions as the keynote at this year's North American Craniofacial Family Conference (NACFC). The event will be held at the Alexis Park Resort in Las Vegas July 22 - 24, 2007 with optional AboutFriends Day free-time activities set for July 25.
In addition, special guest Cindi Broaddus, sister-in-law of Dr. Phil McGraw and a member of the Board of Directors of the Dr. Phil Foundation, will share her inspirational story. Cindi acquired facial and body differences in 2001 when she and a companion were driving down the highway and an unknown assailant dropped a gallon jar of sulfuric acid from an overpass, crashing through their windshield, causing severe burns.
All individuals with facial differences and their friends and families are invited, no matter the nature of their condition or how it was acquired. AboutFace USA serves the entire craniofacial community, and like-minded organizations are encouraged to send an official representative as well as member families.
A series of specialized workshops will round out the program, which will also include ample time for socializing and networking. AboutFace USA Executive Director Debbie Oliver will present the half-day Pathfinder Outreach Workshop on Sunday, July 22. All those interested in outreach, including cleft/craniofacial team professionals, are encouraged to attend.
For further information, contact Debbie Oliver at (888) 486-1209 or debbie@ameriface.org or visit the link noted above in this story.
November 15, 2006
Friend of AboutFace USA and cleftAdvocate Featured in New Book
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.
October 24, 2006
Dates Announced for 2007 North American Craniofacial Family Conference!
AboutFace USA Executive Director Debbie Oliver today announced dates for the organization's annual event, the North American Craniofacial Family Conference (NACFC). The conference will be held July 22-24, 2007 at the Alexis Park Resort in Las Vegas, NV. AboutFriends Day, an informal gathering of conference-goers who stay in town an extra day to socialize, is scheduled for July 25.
"Everyone is invited," said Oliver about the educational and social event. "If you or someone you love is living with a facial difference, whether that is a birth anomaly or an acquired condition, then we want to meet you at the NACFC." Oliver encourages any and all organization leaders and their members to attend the conference.
The NACFC is designed to focus on the psychosocial issues individuals and families face. General sessions and workshops address such issues as bullying and teasing, self-esteem, impact of medical costs on families, battling insurance companies, and the social stigma associated with facial differences. The goal is to outline how to overcome obstacles and build skills in a number of areas, while making new friends who understand the challenges of living with a facial difference.
A Pathfinder Outreach Workshop is also scheduled. Network volunteers will be trained to assist families and coached in how best to be a "shoulder to lean on." Some volunteers also go out in their communities to raise public awareness and understanding. "The workshop covers many bases so we encourage everyone who's ever been interested in lending a helping hand to attend," said Oliver.
Every care has been taken to ensure the event is affordable for families. "The Alexis Park Resort is an all-suite facility and there is no gaming at the hotel," remarked Joyce Bentz, AboutFace USA Program Director. "We've negotiated a room rate of $89, and you can't beat that."
Bentz also noted the hotel is close to the airport but off the Strip and "great for families."
Early-bird registration fees until April 1, 2007 are $125 for individuals and $175 for families (immediate family members). Beginning April 1, 2007, registration fees will increase by $25. Registration includes all conference workshops, joint sessions and materials, welcome reception, breaks, continental breakfast and dinner on Monday, buffet lunch on Tuesday., and free child care for children ages 6 and younger.
Conference details and an on-line registration form are available now on the organization's two websites (www.aboutfaceusa.org and www.cleftadvocate.org). Sponsorship opportunities and advertising space are available. Contact Debbie Oliver by e-mail or call toll-free (888) 486-1209 for more information.
October 5, 2006
AboutFace USA Launches New Website
In an effort to further enhance the organization's outreach capabilities, AboutFace USA announced today that its new, more comprehensive website is now available at www.ameriface.org.
The mission of AboutFace USA is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education on behalf of those the organization serves. AboutFace USA is best known for the cleftAdvocate and Pathfinder Outreach Network programs.
"One of the most exciting features is The Journey," remarked Debbie Oliver, Executive Director. "Both parents and professionals contributed to the piece and it is a wonderful overview to help get families started on the right track."
In its first twelve hours on-line, the new site received hits from Japan, the UK, Turkey, Canada, Australia, Spain and the United States. Visitors included individuals, universities, healthcare providers and other non-profit organizations. In addition to The Journey, the site includes links to state resource pages, and on-line donation capability. Visitors can also subscribe to the newsletter through an automated system.
"The site is a work in progress," said Oliver. Noting that content will be added and updated on a continuous basis, she wants to make sure to incorporate information requested by individuals and families dealing with the everyday challenges of living with facial differences. "Comments and suggestions are always welcome."
For further information, contact Debbie Oliver by e-mail or call toll-free 1-888-486-1209.
August 21, 2006
AboutFace USA Celebrity Cruise Fundraiser Slated for September
Experience Chicago's newest and largest private charter line and support AboutFace USA and the Pathfinder and cleftAdvocate programs...join us on our Celebrity Cruise!
Each year the AboutFace USA board, headquartered in the Chicago area, has an event to raise funds to support our mission. Longtime Chicago newscaster and author John Drummond will be our celebrity host when we sail on the Kanan Cruise Lines (www.kanancruises.com) the evening of Thursday, September 21, 2006 from Navy Pier. It will be a fun evening including cocktail buffet, silent auction, raffle, and of course some stories from John.
Cruise tickets are $150 per person; sponsorship opportunities are available. For tickets and/or to donate silent auction items, contact Debbie Oliver by e-mail or call toll-free 1-888-486-1209.
August 1, 2006
Debbie Oliver Named AboutFace USA Executive Director
Dr. David Reisberg, President of AboutFace USA and Rickie Gill, retiring Executive Director, named Debbie Oliver the new Executive Director of the organization effective August 1, 2006. The announcement was made last week to attendees at the 2006 North American Craniofacial Family Conference in Las Vegas.
"It's a honor to follow in Rickie's footsteps," said Oliver at the Recognition Dinner. "She has worked hard to establish a firm foundation that we will build upon for years to come."
Oliver previously served as Executive Director of cleftAdvocate, the national support organization she and her husband Robert founded several years ago. In 2004, she stepped in as AboutFace USA's program director after the two national support organizations officially partnered.
Reisberg commented on the future of AboutFace USA. "We look forward to continued growth under Debbie's leadership. The Pathfinder program has allowed us to reach many more individuals and families when they need us most," he said, referring to the unique outreach network Oliver established with the help of hundreds of volunteers across the country. Pathfinders focus on individual and family outreach and interface with medical professionals to get information and resources to those who need it.
Commented Gill on her departure, "I am stepping down as the executive director, but I intend to remain involved with AboutFace USA well into the future."
"We welcome Rickie's continued involvement at any level," said Oliver. "She has done so much for those facing the challenges of living with craniofacial conditions...it's an effort that won't soon be forgotten."
July 30, 2006
2006 NACFC Unites Families from Across the Country in Las Vegas
With a focus on family networking and psychosocial issues, AboutFace USA hosted the 2nd Annual North American Craniofacial Family Conference (NACFC) last week in Las Vegas. Attendees from California to New York and all parts in between convened to discuss the challenges of living with craniofacial birth anomalies and acquired facial differences such as those caused by burns, cancer and trauma.
A pre-conference Pathfinder Outreach workshop gave attendees a chance to hone their outreach skills and brainstorm with new and established Pathfinders from around the country to improve how the organization disseminates information to families.
A highlight of the event was the keynote by Dr. Thomas C. Hart, DDS, PhD of the National Institute of Dental and Craniofacial Research. Dr. Hart outlined the uses for facial imaging in the treatment and diagnosis of craniofacial conditions and explained the technology and science behind the imaging process.
Special guests David Roche, Barbara Kammerer Quayle and Amber Hammond also addressed the joint sessions, and specialized workshops were held throughout the event. Adults with facial differences, parents of children with facial differences and children in three age groups enjoyed presentations in separate educational modules. Child care for the youngest attendees was provided free of charge, making it more convenient for parents and families to attend.
At the Recognition Dinner, Dr. David Reisberg, President of AboutFace USA announced that Debbie Oliver would replace the retiring Rickie Gill as Executive Director.
Watch the website and our on-line support listserv at the Family-to-Family Connection for details on next year's event.
Photos available soon!
June 21, 2006
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This cleftAdvocate page was last updated March 25, 2014
March 28, 2007
CarePages Announces Partnership with cleftAdvocate to Give Donations
AboutFace USA Executive Director Debbie Oliver announced today that for the next three months, CarePages will donate $10 to cleftAdvocate for every active CarePage created through the specially-designed cleftAdvocate CarePage website in support of the organization's continued national outreach efforts.
"cleftAdvocate is the leader in cleft/craniofacial networking and support in the United States," said Oliver. "It makes good sense to work with CarePages to offer free websites to our families." She noted that the organization has been working with CarePages for almost a year, making free, private, personalized web pages available to patients and families to help them stay in touch while dealing with healthcare issues.
Jamie Breidenstein, Implementation Specialist for TLContact, Inc., the parent company of CarePages, is excited about working with Oliver on the project. "The service allows you control over communication and provides an easy way for friends and loved ones to respond with messages of support. You can share photos, contact information, visiting hours and relay information when the time is right for you."
The pair noted that it's a convenient way for parents to update family and friends on their child's healthcare, especially during long hospital stays.
"We'd like to thank the CarePages staff for their dedication to our cause," said Oliver. "We look forward to a long and successful relationship with the company."
Should you require help in setting up a CarePage, please contact support@carepages.com or by calling 1-888-852-5521, Monday through Friday from 8 a.m. to 6 p.m., Central time.
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August 31, 2007
CarePages Sweetens the Pot - Now Donating $25 for New cleftAdvocate CarePages Through End of 2007!
We're building a CarePages Directory of cleftAdvocate members - click here!
The cleftAdvocate program of AboutFace USA received in August a check for $220 from CarePages, a result of the partnership announced in March between the two entities. "We want to thank CarePages for their interest in our organization and programs," said AboutFace USA Executive Director Debbie Oliver.
Jamie Breidenstein, Implementation Specialist for TLContact, Inc. (the parent company of CarePages) announced today that for the remainder of 2007, CarePages will increase their donation to the organization from $10 to $25 for every new active CarePage created through the specially-designed cleftAdvocate CarePage website. An active CarePage has three or more members in addition to the CarePage Manager, or a member with three or more visits.
As a bonus, the organization generating the most new active CarePages between September 1 and December 31, 2007 will earn an additional $5,000 donation for their organization.
"I think we can do it," said Oliver, noting the incredible traffic cleftAdvocate CarePages have created so far this year. She reminded organization members that they should use the unique cleftAdvocate CarePage website to help during this campaign.
"It's wonderful that something so useful to our families can benefit the programs of the organization, as well."
August 19, 2007
The Association of Independent Craniofacial Advocates (AICA) announed today the launch of an on-line petition aimed to encourage Congress to support and pass the Reconstructive Surgery Act (HR2820). With an initial goal of 10,000 signatures, those names along with hundreds of personally-signed letters from constituents around the country will be made available to elected officials in Washington DC.
For more information, visit the AICA website, or go directly to the on-line petition:
August 11, 2007
AboutFace USA has announced dates for the 2008 North American Craniofacial Family Conference (NACFC)!
July 21 -23, 2008 – Three FULL days!July 24, 2008 - AboutFriends Day (optional)
July 24, 2008 - AboutFriends Day (optional)255 East Flamingo Rd., Las Vegas, Nevada 89169
Great rate for a 650 sq. ft. room – just $65/night plus applicable taxes!!!
(Sunday – Thursday rate; Friday and Saturday nights available at reduced rate of $125/night plus applicable taxes).
More details available soon at the conference information page.
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