Friday, November 16, 2018

Research Opportunity: Infant Cleft Observer Outcomes Questionnaire (ICOO)

Researchers across three hospitals and universities are studying surgical outcomes of cleft lip patients. The Seattle Children's Hospital, University of Illinois - Chicago (UIC), Shriners Hospitals for Children (Chicago) and the University of Washington have teamed up to learn from patient and their parents about their impressions on change of their infants face after surgical interventions. Study coordinators, Laura Steukle and Solange Mecham describe the process of the study and how you can help in the description below, 

Our study team has spent the last two years interviewing parents and craniofacial providers to create a tool to evaluate interventions and treatments that infants with a cleft lip with or without a cleft palate are going through. Now that this tool has been developed, we are looking to validate the questionnaire. To do this, we are asking parents of young babies and young children with a diagnosis of cleft lip with or without cleft palate to complete the iCOO questionnaire a few days in a row at the following times 1) before surgery 2) 2 days after lip surgery and 3) 2 months after lip surgery.  As our way of saying thank you, we are giving parents $5 a day each day they complete the iCOO with a bonus $25 for each complete series, for a total of up to $160 for their time and effort. We are inviting up to two caregivers in the home to participate. Our goal is that this tool will help clinicians and researchers better understand how these interventions are affecting the whole health and well-being of infants and young children with the hope that this understanding will improve future cleft care.

Dallas Fort Worth. TX Lilly Pulitzer Event

Wednesday, November 14, 2018

From the Bench with Francis: An Interview with the Man that Discovered the Treacher Collins Gene

From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith.

Dr. Francis Smith sits down with Dr. Michael Dixon of the University of Manchester, United Kingdom. He discovered the Treacher Collins syndrome gene (TCOF1). The interview was conducted on October 19th at the University of Manchester and focuses on Dr. Dixon's pioneering research that led to the discovery of the gene and why this research matters so much to those born with TCS. 


Friday, November 9, 2018

Share Why You Give! for Our #GivingTuesday Social Media Campaign

Help us gear up for #GivingTuesday! Tell us why you give to CCA in the comments below or on the CCA Facebook page, add the hashtag #GivingTuesdayCCA, and we will feature your story in the weeks to come.

Wednesday, November 7, 2018

RISE NYC Cher-tastic Event Raises $4400 for CCA Kids

Cher enthusiasts descended on Rise Bar in New York City to raise money for CCA kids, enjoy performances by Chad MIchaels, winner of RuPaul’s Drag Race and Candi Stratton, Miss Trans USA 2019, and bid on silent auction items during the first week of November 2018. Thanks to ticket sales and silent auction items CCA raised $4,400 at this one-of-a-kind event.
Scott Guzzo and Paula Guzzo,
CCA Ambassadors

This diehard group of Cher fans were headed on a cruise together but not before giving back to our kids. The night began with some drinks and dancing at the bar surrounded by the bright lights of the city and Cher fans from around the world.. Later Chad Michaels sang a few Cher tunes complete with a number of elaborate costume changes just as the diva herself would do. Next Candi Stratton performed for the crowd stepping out into the audience to dance and interact with everyone in the club. To close out the performances, parent, former CCA board member, Paula Guzzo, spoke about the impact that CCA had on her family after the birth of their son Scott Guzzo 34 year ago. Scott was the CCA ambassador for the Cher Crewz that departed the next day.

Many talented and generous people were kind enough to donate items to the silent auction. Artist and friend of CCA, Scott Clarke donated a number of his Cher-related artworks. A signed Cher T-Shirt, poster, backstage passes and a hotel stay at Hilton’s Millenium New York Downtown hotel were all ripe for the bidding during the evening’s festivities.

CCA is grateful to Rise Bar NYC and Ralph Martinelli of R and R Travel for including us as benefactors of this event. Many thanks also go out to Scott Guzzo and his family for representing CCA as ambassadors in the best possible way.We love you all!  

L-R Robert Ryan, Chad Michaels, Ralph Martinelli, and Candi Stratton