Please keep in mind that these highlights are reported from my personal perspective.
There were many, many scientific programs presented for healthcare professionals,
exhibits presented by several companies, and of course, the Parent/Patient Conference.
While no one person could possible attend all of these events,
I believe Cleft Advocate can offer some insight into each of these categories.
While I am certain I will overlook mention of some people or information, I am hoping to give an adequate overview of the events I attended in Seattle last week!
The Conference started on April 30; however I did not arrive until mid-morning on Thursday, May 2.
I checked in at the events desk and met Amy Mackin, Deputy Director of the Cleft Palate Foundation. This was a real hub of activity and Amy and the crew did an outstanding job of keeping everything flowing very nicely. (Meet the CPF staff.)
I met up with Susan Beaudette of Zip-N-Squeeze, who introduced at this conference a brand new cleft palate nurser, suitable for post-operative feeding immediately after surgery. The new product was met with great interest and is available now.
Susan then introduced me to Betsy Wilson of Let's Face It. While I have corresponded with her in the past, this was our first in-person meeting! Betsy is an encyclopedia of knowledge, and I picked her brain at every opportunity throughout the rest of the week! When you visit her website, be sure to request her phenomenal 60-page Resource Guide. For your free copy, please send a 9"x12" self-addressed, stamped envelope ($3.50 postage) and a note telling them about yourself to the following address:
Let's Face It
P.O. Box 29972
Bellingham, WA 98228-1972
At the CPF Annual Luncheon that afternoon, credit was given to the many, many people who work diligently throughout the year to be sure that the Foundation's goals are met. The Parent/Patient Leadership Award for 2002 was presented to Julie DeLaurier (view a list of past recipients), and Mikyong Park of Korea was announced as the winner of the Visiting Scholar Award. In addition, $35,000 in grants were awarded.
After lunch I met Arthur and Shelley Green, the coordinators for Saturday's Parent Conference. Shelley is an educator and Arthur is an attorney. With the help of their son, the Greens were instrumental in making Florida one of only nine states mandating health insurance coverage for cleft lip and palate. Additionally, Arthur assists families with insurance and advocacy issues on a pro bono basis.
The remainder of Thursday I spent as an exhibitor, making contacts with professionals from the US and the world. Many were very familiar with Cleft Advocate, some had heard but hadn't visited the website yet, and to others Cleft Advocate was totally unknown...but they know about us now!
I had the pleasure of meeting the Melinda Siwek, the developer of Pedi-Wraps. Melinda's grown son was born cleft-affected and she found herself dissatisfied with the restraints supplied by the hospital. Along with Medi-Kids Director of Sales & Marketing Veronica Springfield, Melinda attends several medical conferences every year. They put me in touch with Dr. Libby Wilson, one of Erin's very first plastic surgeons; however, I was unable to locate Dr. Janet Salomonson over the coming days.
A very innovative product was showcased by Vivian Jones, Director, Marketing & Sales for Wolfe Tory Medical, Inc. If you have concerns about an upcoming nasoendoscopy with your child, consider the MADdy.Pediatric Mucosal Atomization Device. While the Wolfe Tory website is currently designed for medical professionals, a family-friendly site is in the works. Consult your otolaryngologist (ENT) with questions you may have about this product.
The various subjects of the abstracts submitted for the Poster Sessions were particularly intriguing, especially to me as a parent! Topics included Nasoalveolar Molding (Grayson, Cutting and Brecht), Overdiagnosis and Medication for ADHD in Children with Cleft (Richman, Millard, Wilgenbusch and Ryan), and Behavioral Analysis and Treatment of Shyness in Children with Cleft (Richman, Cooper-Brown, Reed and Wilgenbusch).
There were literally scores of these abstracts, and the poster sessions gave insight into the research being performed on behalf of our children. Poster session topics can be viewed at the ACPA website.
I missed one report posted before my arrival, created by an elementary school student. My understanding is that this cleft-affected youngster won his school science fair with his report. I have been in contact with the craniofacial team at Children's Hospital Seattle in hopes of securing permission from the boy and his parents to publish his presentation here at Cleft Advocate.
Later that evening, Susan, her husband Michael and I had dinner with Betsy Wilson at a wonderful little place called Place Pigalle down at the Pike Place Market. It was blustery cold, but well worth the short walk from our premium parking space! And the Sheraton's Concierge said we would never be able to park...!!
Friday included an incredible day of speaking with numerous professionals, and ended with a spectacular gathering at the Space Needle. There I had a chance to meet with a dental student from Pennsylvania, a plastic surgeon, a social worker from Florida, and many others in a casual setting for more intriguing conversation.
Saturday's Parent Conference was far more inspiring than I had ever imagined. First thing in the morning I met Rickie Anderson, Executive Director of About Face USA. What an incredible lady with a touching personal story about her son, a Crouzons patient, whom she was told would never succeed due to his disabilities. Rickie smiled as she told me of his graduation from college!
Before the formal program began, I met some of our Cleft Advocate moms, including Melissa and Kate, both from Washington.
Gerald traveled all the way from Wisconsin to attend. He has a very telling tale of how things have changed for cleft/craniofacial patients throughout the years.
Welcoming remarks were made by Dr. Earl Seaver, President of the Cleft Palate Foundation, and a Speech/Language Pathologist at Northern Illinois University. Dr. Seaver introduced Stacy Keach, the Foundation's Honorary Chairman.
Stacy told of his growing up, noting that his family always told him that he could be anything he wanted to be. Stacy attended several colleges, including UC Berkley and the Yale Drama School and went on to become an accomplished Shakespearean actor. He is currently the star of the hit TV series Titus.
Dr. Ron Strauss was the keynote speaker for this fabulous event. Dr. Strauss is a Dentist and a Sociologist of Medicine at the University of North Carolina at Chapel Hill. His address "Blessings in Disguise: A New Paradigm for Thinking About Children with Craniofacial Conditions" brought us all to think about what we consider normal and acceptable appearance, and when is enough considered enough when it comes to surgery to approximate *normal* appearance. He also asked us to consider how what we feel and express as adults molds the attitudes of our children growing up with craniofacial conditions.
The presentation included a poem written by one of his patients, a reading that brought tears to many eyes. Dr. Strauss has given Cleft Advocate permission to print his address. So grab a cup of coffee and get ready for a real eye-opener! Read the text of the keynote address here.
During the break, many of us met with Stacy Keach. I will publish the picture he took with me and post the autographed photo I asked him to address to Cleft Advocate. We shook hands and he assured me he would be putting our link on his website, www.stacykeach.com, and he thanked me for the work we are doing at Cleft Advocate.
Resuming the conference, The Cleft Palate Foundation and Deputy Director Amy Mackin put together an incredible presentation which included a *dream team* panel of cleft/craniofacial professionals.
The moderator for this discussion, entitled Why Team Care? was Dr. Bill Wharton, Executive Secretary of the Florida Cleft Palate-Craniofacial Association and an advocate in Florida for 45 years. Panelists included:
Mislen Bauer - Pediatrician and Geneticist at Miami Children's Hospital
Michael Buckley - Oral/maxillofacial surgeon at the University of Pittsburgh
John Canady - Plastic Surgeon at the University of Iowa
Frank Farrington - Pediatric Dentist at the Medical College of Virginia, Richmond
Marilyn Jones - Pediatrician and Geneticist at Children's Hospital San Diego
Ross "Rusty" Long - Orthodontist at Lancaster Cleft Palate Clinic in Pennsylvania (Dr. Long is the President of the American Cleft Palate Association.)
Libby Marks de Martino - Nurse at Children's Hospital Los Angeles
Harlan Muntz - Otolaryngologist at Primary Children's Hospital, Salt Lake City
Earl "Gip" Seaver - Speech/Language Pathologist and Chair of the Division of Communication Disorders at Northern Illinois University in Dekalb
Kim Uhrich - Social Worker at the Craniofacial Center of the University of North Carolina, Chapel Hill
The particulars of three cases were presented:
1. A 4-year-old child with cleft palate who has hypernasal speech
2. A teenager born with cleft lip and palate who has an underbite
3. A newborn baby
Each specialist gave their view on future treatment of the child or adolescent.
Parents were also encouraged to approach the microphone and ask questions specific to the case being discussed.
This presentation demonstrated to parents how a cleft team conferences on each and every child after the clinic visit is completed. It was an outstanding opportunity to see a team at work, and I believe the questions from the audience were outstanding.
Just before lunch I had the honor and privilege of meeting Dr. John Canady. He is the surgeon who performed Harrison's lip surgery a few weeks back (Jessica's son from our parent network). He thanked me for the work we're doing at Cleft Advocate, and wrote tonight to say if there is anything he can do for Cleft Advocate, just let him know! Dr. Canady also took the time to meet with one of our Cleft Advocate Family-To-Family members to discuss the treatment of their child. I was very impressed with his caring attitude, as well as his *performance* as a member of the dream team.
Rickie Anderson and About Face USA hosted a superb lunch for all the parents and professionals in attendance on Saturday. It is there I met Michael from Los Angeles, who made sure he made it to Seattle on the way to his business meetings in New York. "This is for my son" he said with a sparkle in his eye! Another sign of true dedication from all our special parents!
The afternoon saw us in small roundtable discussions on the psychological and social issues of cleft patients and their families. I sat in with the group addressing these issues for adolescents and young adults. We were joined by two young ladies, Hannah, 15 and another young lady (if you're reading this, please e-mail me...I didn't get your contact information!) in her early 20s, which really gave the parents and professionals in this small group (about a dozen of us) insight into how teens really feel on several issues. The girls agreed that middle school were the hardest years, but also said that the attitudes and support of their families and close friends got them through the tough times.
Facilitators of these roundtable discussions included:
Nancy Berk - Professor of Psychology at the University of Pittsburgh
Will Eiserman - Researcher at the University of Colorado, Boulder
Arthur Green - Regional Coordinator for the Florida Cleft Palate-Craniofacial Association and a board member of the Cleft Palate Foundation
Kathy Kapp-Simon - Professor, Researcher and Psychologist at the Cleft Lip and Palate Institute, affiliated with Northwestern University in Chicago
Amy Mackin - Deputy Director of the Cleft Palate Foundation
Lynn Richman - Professor and Chair of the Division of Psychology at the University of Iowa Department of Pediatrics
Ron Strauss - Keynote speaker from the University of North Carolina, Chapel Hill
After the break, we wound up with Arthur and Shelley Green's presentation "Advocacy By Families: A View Into Florida". Joining them were Mislen Bauer, Bill Wharton and Eric Stelnicki, Plastic Surgeon.
The Greens stressed the importance of being a parent advocate on many levels, from building self-esteem to preparing children for social situations to being a partner with the child's cleft team. They presented an excellent graphic, "How Does the Real World Work for CFA Children & Parents" and Cleft Advocate has been given permission to publish it here. (See graphic)
Their presentation binder included information on becoming a Parent Advocate Team Member, running a support group and newborn outreach program and a great outline for legislative advocacy, "10 Steps to Political Action".
After the presentations were made and the lights went out in the meeting rooms, we were delighted to spend some special time with each other at a wine and cheese reception. I had the privilege of meeting with parents from the Cleft Advocate group, and other on-line support groups, as well as a myriad of professionals from every cleft-related field. Although the reception was short, I know that I made some life-long friends during that hour!
On Saturday evening, very small group of us met with Dr. Earl Seaver, President of the Cleft Palate Foundation and Amy Mackin, Deputy Director of CPF. Over a wonderful dinner, we discussed our goals for the coming six months and year--how can our various groups work together to promote our mutual goal of serving the parents and patients of the cleft/craniofacial community?
Participants were:
Arthur and Shelley Green - Florida Cleft Palate-Craniofacial Association
Betsy Wilson - Let's Face It
Rickie Anderson - AboutFace USA
Kelly Turner - Director/Co-Founder of the Heads Up!!! Foundation
Gareth Davies, Chief Executive of CLAPA (UK)
Margaret Ieronimo - Foundation for Nager and Miller Syndromes
Debbie Oliver - Cleft Advocate
It was an honor to attend this working dinner. There were so many ideas from these successful long-time advocates, I am still reeling! I consider it an incredible networking opportunity and I will keep you posted as our mission develops.
On Sunday before my flight, I was honored to meet with Mikyong Park of Korea, the winner of the Visiting Scholar Award. She will be touring the United States for the next month visiting several cleft teams, noting the protocol, and then going back to Korea to implement the team concept in her country. She noted that Korea isn't familiar with the parent/patient support network concept and she took from that meeting my materials about the Pathfinder Program.
The flight home was a little bumpy, and I was tired, but my mind is just swimming with new ideas, wonderful contacts, the faces of new friends and colleagues...
My love and best regards,
deb
debbie@cleftadvocate.org
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This cleftAdvocate page was last updated March 25, 2014
ACPA/CPF Seattle Meeting Hightlights 2002
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