CHARGE Syndrome Foundation - 2007 Tentative Program

2007 "Tentative" Schedule

(This schedule may change between now and the conference)

Thursday:

10:00 - 6:00      Registration
2:00 - 6:00        Professional Board Meeting (conference presenters & invited guests)
7:00 - 10:00      Opening reception for everyone. (snacks and soft drinks provided)

Friday:

7:00 - 4:00        Registration
7:00 - 9:00        Breakfast
7:30 - 8:30        Beach Club registration
8:00 - 11:45      Morning session of Beach Club
9:00 - 9:45        Opening general session (President, Neal Stanger)
9:45 - 10:05      General Session Keynote-- Siblings, Too important to ignore (Tina Prochaska)
10:05 - 10:30    Break
10:30 - 11:45    Breakout session #1
                                      Language development (Lori Swanson, Nancy Steele, Wendy Keedy)
                                      Clinical and genetic evaluation of children with CHARGE syndrome,
                                                       the Baylor University study (Seema Lalani)
                                      Emotional competence (David Brown)
                                      Grandparents meeting (facilitator: Nancy Hartshorne)
                                      Father's Forum (facilitator: Tim Hartshorne)
11:45 - 1:00      Lunch
12:30 - 5:00      Afternoon session of beach club open
12:15 - 3:45      Sib Shop # 1--pre registration required (Tina Prochaska, Carol Robbins)
1:00 - 2:15        Breakout session # 2
                                      Cracker barrel session on cochlear implants (Kat Stremel, et al.)
                                      Transition-to-Adulthood: resources (Betsy McGinnity); Sexuality in CHARGE
                                                       syndrome (Maurice Belote)
                                      CHARGE 101 for New Families: diagnosis, anesthesia, etc. (Meg Hefner,
                                                       Kim Blake)
2:15 - 2:30        Break
2:30 - 3:45        Breakout session # 3
                                      Strategic conflict management skills in special education settings (John
                                                       Reiman)
                                      Familial CHARGE syndrome-- Recurrence risk ? (Conny van Ravenswaaij,
                                                       Jorieke Bergman) & Puberty and Smell (Jorieke Berman)
                                      Transition to adulthood Part 2 (Joe McNulty, Kathy McNulty)
                                      CHARGE 102 for New Families: feeding, development. (Sandra Davenport,
                                                       Kim Blake, Rob Last)
3:45 - 4:15        Break
4:15 - 5:30        Breakout session # 4
                                      Panel on psychotropic medicines (Tim Hartshorne, Lee Wachtel)
                                      Homeschooling (Shirley Minster)
                                      Transition to adulthood Part 3 (Susan Rezinski, Philip Wismer)
                                      CHARGE 103 New Families; communication, transition to school, (Sandra
                                                       Davenport, Kim Blake, Rob Last)
                                       Fundraising Training
6:00 -                Dinner meeting of adults with CHARGE syndrome (Facilitators: Pam Ryan,
                                                        Meg Hefner)
Evening           Conference participants are on their own for dinner

Saturday:

7:00 - 4:00        Registration is open
7:00 - 9:00        Breakfast
8:00 - 11:45      Morning session of Beach Club
8:45 - 12:00      Sib Shop # 2--pre registration required (Tina Prochaska, Carol Robbins)
9:00 - 9:55        General membership meeting; Updates & Awards (President, Neal Stanger)
9:55 - 10:20      General Session Keynote -- Learning From Each Other (Joe McNulty)
10:20 - 10:35    Break
10:35 - 11:45    Breakout session #5
                                      Vestibular function, balance, and development (Lori Travis, Jim Thelin)
                                      Strategic conflict management processes in special education settings:
                                                       IEP facilitations, resolution meetings, & mediation (John Reiman)
                                      The behavioral phenotype in CHARGE syndrome (Tim Hartshorne)
11:45 - 1:00      Lunch
12:30 - 5:00      Afternoon session of beach club open
12:30 - 3:45      Sib Shop #3--pre registration required (Tina Prochaska, Carol Robbins)
1:00 - 2:00        Breakout session # 6
                                      Puberty & growth--including response to growth hormone (Jeremy Kirk)
                                      Panel discussion on education & learning (Martha Majors, Sharon Stelzer)
                                      Creating a community for adult living (Jackie Kenley, Nancy Cornelius)
2:00 - 2:15        Break
2:15 - 4:45        Posters, Professionals & Exhibits
2:15 - 3:15        Breakout session # 7
                                      Posters, Professionals & Exhibits
                                      Person centered planning (Nancy Steele, Donna Consacro, Susan Hiscutt)
                                      Pain issues in CHARGE syndrome (Veronica Bernstein)
3:15 - 3:45        Break
3:45 - 4:45        Breakout session # 8
                                      Posters, Professionals & Exhibits
                                      Neurodevelopemental perspective: learning & behavior (Kim Lauger)
                                      The whole child: going beyond the IEP & IFSP (Donna Lynne, Kim Zeigler)
6:00 -9:30        CARNIVAL -- DINNER -- SILENT AUCTION -- DANCING !!!!!!!

Sunday:

7:00 - 9:00        Breakfast
8:00 - 12:00      Beach Club
9:00 - 9:10        Opening general session
9:10 - 10:10      California Dreaming -- Individuals with CHARGE syndrome answer
                            questions that were previously submitted (Facilitators Pam Ryan, Meg Hefner)
10:10 - 10:35    Break
10:35 - 11:45    Speakers & Professionals answer questions
11:45 - 12:00   Farewell & 2009 conference information