Consults
Please refer to the Conference Brochure for information on the speakers who will provide individual consultations. To sign up for an appointment, complete the form on page 8 of the Conference Brochure and mail it in with your conference registration.
Kathleen Rives Bogart is working on her doctorate in psychology at Tufts
University. She will hold 30 minute one on one interviews with people who are at
least 18 years of age and have Moebius syndrome. See the attached flyer for more information.
Elizabeth Engle, MD and David Hunter, MD and their team at Children's
Hospital Boston are studying the eye movement abnormalities associated with
Moebius syndrome and their genetic causes. Individuals with Moebius syndrome
and their family members may participate in their research which involves a
family and medical history, blood or saliva sample, and an ophthalmic and brief
physical /neurological examination. A consult takes about one hour.
Ethylin Wang Jabs, MD and her research assistants are interested in meeting
with individuals who have Moebius and their family members to assess objective
differences in facial structure using 3D digital photography.
Neil Jones, MD is the Chief of Hand Surgery at the University of California,
Irvine Medical Center, specializing in hand deformities in children. Dr. Jones will
do consultations in a group setting after his presentation on Friday, July 30.
Rama Oskouian, DDS will be scheduling pediatric oral exams and talking about
dental hygiene while collecting data to write an article and present her findings at the
2012 conference.
Wendy Roberts, MD, FRCP(C) is a Developmental Pediatrician and
Professor of Pediatrics at the University of Toronto, and is Co-Director of the
Autism Research Unit at The Hospital for Sick Children. She is researching the
link between Moebius syndrome and Autism. Dr. Roberts and her team will
conduct evaluations (several hours for children and parents) during the
conference. Evaluation time can be split throughout the weekend.
Karen Schmidt, PhD is interested in videotaping and photographing the faces
of people with Moebius syndrome, to learn about the connection between face
shape and ability to move the face. Participants in the study will be videotaped speaking and
making facial expressions and they will also have a 3D digital image of their face
taken. Children with Moebius syndrome must be 5 years of age or older to participate. One other family member (parent or sibling) will also be videotaped.
Ronald Zuker, MD, FRCS(C), FACS, FAAP is widely known in the Moebius
syndrome community for pioneering the Gracilis Muscle Transplant Surgery (aka
Smile Surgery). He is Professor of Surgery at the University of Toronto and
plastic surgeon at The Hospital for Sick Children. Dr. Zucker is offering
complimentary sessions with parents and children who want more information on
the smile surgery. For more information, visit www.smile-surgery.com
Sara Rosenfeld-Johnson, SLP will be offering mini oral-motor assessments
for children and adults. Each evaluation will be 30 min and offered at a reduced
cost of $75. Pay by cash, Master Card, Visa, or Check ( to SRJ Therapies) at the
conference. Parents may wish to bring a video recorder to tape the session for
your speech pathologist. For more information, visit www.talktools.net and see the attached flyer.
Kathleena Gorga,(Embracing Deep Beauty) "is an artist, healer, and gifted
teacher" dedicated to teaching others how to "appreciate and cultivate true
beauty". Women and girls 12+ with Moebius syndrome learn about tools and
techniques to enhance your outer beauty with eco safe cosmetics in Saturday's
Enhancing Your Deep Beauty session. To schedule a complimentary Personal
Enhancement Session refer to the registration form (pg. 5). For more
information, visit www.consciousbeauty.com.
Teen Bowling will be on Saturday afternoon. There is a $15 charge that can be paid with your registration or at the conference. Please print and sign the permission slip. It can be returned with your registration or bring it to the conference.
SibShops is a workshop for siblings of children with disabilities ages 8 to 12, and requires pre-registration. For more information, see http://www.siblingsupport.org.
