Please Note: This Agenda is still under development and is subject to change without notice.

Combined Family and Professional Program

(Updated on 06/23/2012)

 

Friday, July 6^th

8:00 AM        Registration Opens, Disney’s Yacht and Beach Club Resorts Asbury Rotunda and Lobby

4:00 PM        Welcome Reception – Light Refreshments, Disney’s Yacht and Beach Club Resorts, Asbury Rotunda and Lobby

• “22q and TuTu” Silent Auction and Shoppe for Everything 22q – Opens, Asbury Rotunda and Lobby

5:00 PM       Opening Remarks, Disney’s Yacht and Beach Club Resorts, Grand Harbor Ballroom South – Anne Bassett, Carol Cavana, Donna McDonald-McGinn, Wendy Rose

• Welcome and Opening Remarks  - Program Chair and Organizing Committe
• Parade of Nations
• Setting the Programmatic Stage

5:15 PM        Angelo DiGeorge Memorial Award Presentation – Peter Scambler and Anne Bassett        

Session 1:  Pulling Together for the Long Haul

Disney’s Yacht and Beach Club, Grand Harbor Ballroom South

Moderators: Carol Cavana and Wendy Rose – 5:30 to 6:30 PM

5:30 PM           Carol Cavana

• Making Newborn Screening a Reality – Why Families Care

5:35 PM           Wendy Rose

• Detection – Care – Cure: A Common Goal

5:40 PM           Jill Stein

• Supporting Regional Clinical Centers of Excellence – Why and How

5:45 PM           Michelle Breedlove-Sells

• Benefits of Summer Camp – Priceless!

5:50 PM           Maria Kamper

• It’s a Small World – International Collaborations

5:55 PM           Sheila Kambin

• The Miracle of Social Media – “22q at the Zoo” Worldwide Awareness Day

6:00 PM           Brenda Finucane

• The Same Name Campaign – Practice Makes Perfect

6:05 PM           Karen Ruckman-Lindsay

• Living with 22q – One Journey
• Instrumental Performance

6:20 PM           Discussion

Session 2: Newborn Screening, Prevalence and Why It Matters

Disney’s Yacht and Beach Club, Grand Harbor Ballroom South

6:30 PM           Donna McDonald-McGinn

• Where Have We Been?  Where Are We Going?  How Can Newborn Screening Help Us Along This Journey?

6:40 PM           Anne Bassett

• Where Have We Been? Practical Guidelines for Managing Patients – A Document for Change

6:45 PM           Michael E. Mitchell

• Impact of Early Detection of 22q11.2DS Related Congenital Heart Disease: Implications for Newborn Screening

6:50 PM           Julie Wootton

• Remembering Max: In Hopes of Making a Difference Beyond the United Kingdom

6:55 PM           Sheila Kambin

• The Odd Man Out!  When the Patient Does Not Fit the Profile – One Family’s Diagnostic Odyssey

7:00 PM           Aoy Mitchell

• Newborn Screening – How, Why and When?

7:10 PM           Laird Jackson

• 22q11.2DS Array Results in Consecutive Prenatal Diagnostic Screenings – A Window Into Prevalence

7:20 PM           Melissa K. Maisenbacher

• Prevalence of 22q11.2DS in Products of Conception Lend Insight Into Non-Invasive Prenatal Diagnostic Testing

7:30 PM           Thomas Werge

• Estimating Incidence Rates and Clinical Profiles Using Danish Health Registers and Biobanks

7:40 PM           Peter Scambler

• Summing It Up

7:45 PM           Discussion

8:00 PM           Adjourn – Dinner on Your Own

Family Program

Saturday, July 7^th

9:00 AM       Registration Open – Disney’s Yacht and Beach Club Resorts, Asbury Rotunda and Lobby

Session A: Simultaneous Programs         10:00 AM – 11:30 AM

 

Children’s Program:

Making Memories! Disney’s Yacht and Beach Club Resorts, Asbury Hall D

• “22q and Sassy Doo”! (Children – Ages 3 years and older)
• “I’m a Super Hero”! (Children – Ages 3 years and older)
• Tweens and Teens – Video Gaming! (Children – Ages 8 years and older)

Simultaneous Adolescent and Adult Workshop Options:

Getting to Know You! – Disney’s Yacht and Beach Club Resorts

Choose from one of the following simultaneous sessions:

A.1  Sibshop – A Program for Adolescent Siblings – Barb Haas-Givler, Brenda Finucane, Alison Blackmon and Justin Weinberg, Asbury Hall A

 A.2 Breaking the Ice – 22q Bingo! (Adolescents and Adults with 22q11.2DS) – Wendy Rose, Michelle Breedlove- Sells, Ayne Lawlor, Missy Disibio, Kayla Disibio, Lauren Dodge, Joseph Lukac, and Meg Maguire, Asbury Hall B

 A.3  Mom’s Make a Difference So Focus On You! – Zumba Dancing With International Meet and Greet!  Swati Patel, Carol Cavana, Julie Wootton, Maria Kamper, Anne Lawlor, Mindy Dodge, Danielle Krijger and Barbi Weinberg,  The Admiral Yacht Pool

 A.4  Dad’s Morning Out – Taking Time to Unwind (Or Wind Up!)  – Joe Uccello, Marc Weinberg, Louis Cavana and Dennis Green, Beach Volleyball Court

A.5  Grandparents Need Attention Too! – Alice Bailey and Louise Amlie-Wolf, Salon 8

Session B: Simultaneous Programs 1:30 PM – 3:00 PM

Workshop Options:

Choose from one of the following simultaneous sessions:

One For All and All For Fun! - Disney’s Yacht and Beach Club Resorts

B.1   Scavenger Hunt (Adolescents and Adults) – Alice Bailey, Swati Patel, Missy Disibio, Kayla Disibio, Lauren Dodge, Joseph Lukac,  and Ayne Lawlor, Asbury Rotunda

Now What? - Disney’s Yacht and Beach Club Resort

B.2   Customize the Learning Environment: Effective Strategies to Support Behavior and Learning (Parents, Grandparents and Caregivers) – Barb Haas-Givler and Meg Maguire, Asbury Hall A

 B.3   Dealing with Behavioral Differences During Adolescence and Adulthood (Parents, Grandparents and Caregivers) – Raquel Gur, Daneen Whinna and Margaret Souders, Asbury Hall B

 B.4   Legal Zoom – How to Navigate Special Needs Trusts, Insurance Claims and Educational Appeals (Parents, Grandparents and Caregivers) – Marc Weinberg, Michael Rama and Marilyn Cohen, Salon 8

Sunday, July 8^th

9:00 AM    Registration Open - Disney’s Yacht and Beach Club Resorts, Asbury Rotunda and Lobby

Session C: Simultaneous Programs        10:00 AM – 11:30 AM

Workshop Options:

Choose from one of the following simultaneous sessions:

Capture the Moment - Disney’s Yacht and Beach Club Resorts

C.1  Photography for Beginners (Older Children, Adolescents and Adults) [Please bring a camera] – Debbie Reynolds, Michelle Breedlove-Sells, Ivy Reynolds, Nadia Zomorodian and Alice Bailey, Asbury Hall D

Working Things Through – Together - Disney’s Yacht and Beach Club Resorts

C.2          Go to Sleep! Hands-On Demonstration to Help Fall and Stay Asleep (Adults, Parents, Grandparents and Caregivers – Children are welcome and encouraged to attend with their Parent/Caregiver) – Margaret Souders, Daneen Whinna and Swati Patel, Asbury Hall

C.3          Puberty and Emerging Sexuality (Parents, Grandparents and Caregivers) – Natalie Blagowidow, Sheila Kambin and Louise Amlie-Wolfe, Asbury Hall A

C.4          Sharing the Diagnosis Across the Lifespan (Parents, Grandparents and Caregivers) – Betsy Leech, Brenda Finucane and Kelly Schoch, Asbury Hall B

 

Session D: Simultaneous Programs 1:30 PM – 3:00 PM

Workshop Options:

Choose from one of the following simultaneous sessions:

Riding Things Through with 22q – Disney’s Yacht and Beach Club Resorts

D.1  Speak Out – A Program for Adolescents with 22q11.2DS – Brenda Finucane, Daneen Whinna and Joseph Lukac, Asbury Hall C

 D.2  The Birds, the Bees and Internet Safety (Adolescents and Adults with 22q11.2DS) – Natalie Blagowidow, Sheila Kambin, Missy Disibio, Ayne Lawlor and Kayla Disibio, Asbury Hall D

Challenges With Solutions - Disney’s Yacht and Beach Club Resorts

D.3  Feeding, Swallowing and Speech (Parents, Grandparents and Caregivers) – Peggy Eicher, Maria Mascarenhas, Cindy Solot and Marilyn Cohen, Asbury Hall A

 D.4  Navigating IEP’s and Creating Positive School Partnerships (Parents, Grandparents and Caregivers) – Ed Moss, Donna Cutler-Landsman and Barb Haas-Givler, Asbury Hall B

7:30 PM                   “22q Barbeque” – Character Dinner for All! Disney’s Yacht and Beach Club, Marina/Boardwalk

 

Monday, July 9^th

7:00 AM        Registration – Disney’s Yacht and Beach Club Resorts, Asbury Rotunda and Lobby

Session 3: 22q – What’s it to You? 

Grand Harbor Ballroom South

8:00 AM          Good Morning Florida! Daily Remarks – Anne Bassett, Carol Cavana, Donna McDonald-McGinn and Wendy Rose

8:10 AM          Carol Cavana, Sheila Kambin and Wendy Rose

• “It Takes A Village”
• Honoring Heroes Amongst Us
• Inaugural “Unsung Hero Award”

8:20 AM          Rick Guidotti, Positive Exposure

• “Through the Looking Glass” – Recognizing Value in Difference

8:50 AM          Discussion

9:00 AM          Donna McDonald-McGinn and Anne Bassett

• Nuts and Bolts – What Are the 22q11.2 Deletion and Duplication Syndromes?

9:45 AM          Discussion

10:00 AM        Coffee Break – Asbury Lobby

 

Session E: Simultaneous Program          10:00 AM – 11:30 AM

Workshop Option:

Put On a Happy Face - Disney’s Yacht and Beach Club Resorts

E.1   Supporting Self Esteem and Sharing Your Life Perspective With the World (Older Children, Adolescents and Adults) – Rick Guidotti, Brenda Finucane and Alice Bailey, Asbury Hall A

Session 4: Of Mice and Men – What Can Basic Science Tell Us?

Grand Harbor Ballroom South

Moderators: Peter Scambler and Bernice Morrow

10:30 AM                      Peter Scambler

• Understanding the Developing Head and Neck

10:45 AM                     Bernice Morrow

• The Heart and Why it is Affected

11:00 AM                    Anthony LaMantia

• Behavior in Mice as a Clue to Behavior in Humans

11:15 AM                 Discussion

Session 5 – Drug Discovery and Treatment Outlook

Grand Harbor Ballroom South

Moderators: Anthony LaMantia and Christian Marshall

11:30 AM                 Christian Marshall

• What Can Studies in Autism tell us about 22q11.2DS?

11:45 AM                 Paul Wang

• Lessons from Fragile X and Down Syndrome Too!

12:15 PM                 Discussion

12:30 PM                 Lunch 22q Style – Check Your Badges for Seating! Disney’s Yacht and Beach Club Resorts, Salons 5-8

1:15 PM          2012 Family Group Photo Grand Harbor Ballroom South

Session F: Simultaneous Program           1:30 PM – 3:00 PM

Workshop Option:

Mind Over Matter - Disney’s Yacht and Beach Club Resorts

F.1   Care for the Caregiver: Use of Mindfulness Based Stress Reduction for Parents of Adolescents with Autistic Spectrum Disorders (Parents, Grandparents and Caregivers)  – Chris Moriconi, Margaret Souders, and Alice Bailey  – Asbury Hall A

Session 6: Healthcare Guidelines – There’s an App for That I

Grand Harbor Ballroom South

Moderators: Elizabeth Goldmuntz and Kathleen Sullivan

1:30 PM          Elizabeth Goldmuntz

• The Heart

1:40 PM           Kathleen Sullivan

• Infection and Related Problems

1:55 PM          Maria Mascarenhas     

• Digestion

2:05 PM           Peggy Eicher

• Feeding

2:15 PM           Solveig Oskarsdottir

• Ear, Nose and Throat

2:25 PM           Brian Forbes

• The Eye as a Window to the Brain

2:35 PM           Discussion

Session 7: Healthcare Guidelines – There’s an App for That II

Grand Harbor Ballroom South

Moderators: Nancy Unanue and Alex Habel

2:50 PM           Nancy Unanue

• Thyroid Disease and Growth Issues

3:00 PM           Alex Habel

• Growth Charts

3:10 PM           Lorraine Katz

• Calcium Problems

3:20 PM           Michele Lambert

• Bleeding

3:30 PM           Rosario Mayro

• Teeth

3:40 PM           Dino Colo

• Bones

3:50 PM           Annique Hogan

• Keeping It All Together By Establishing a Medical Home

4:00 PM           Discussion

4:20 PM           Afternoon Tea – Asbury Lobby

Session 8: 22q It Starts With You – An International Perspective

Grand Harbor Ballroom South

Moderators: Julie Wootton and Maria Kamper

4:40 PM           Julie Wootton    

• Max Appeal’s Activity Programmes for Young People in the United Kingdom

4:50 PM           Maria Kamper

• Establishing Good Working Partnerships with Teachers in Australia

5:00 PM           Anne Lawlor

• Need for Informational Leaflets in Ireland

5:10 PM           Daniella Krijger

• What Difference? A View From the Netherlands

5:20 PM           Mindy Dodge

• Rolling Up Our Sleeves For Good in the USA

5:30 PM           Fred Weiner

• The Value in Establishing 22q11.2DS Specific Summer Camps – Lessons from Dragonfly Forest

5:40 PM           Discussion

6:00 PM          Adjourn – Dinner on Your Own

9:00 PM           Movie on the Beach for Hotel Guests, Disney’s Yacht and Beach Club Resorts

 

Tuesday, July 10^th

7:00 AM                  Registration – Disney’s Yacht and Beach Club Resorts, Asbury Rotunda and Lobby

Session 9: What a Difference a Palate Makes!

Grand Harbor Ballroom South

Moderators: Christina Persson and Hillary Joyce

8:00 AM           Christina Persson

• Speech

8:15 AM            Oksana Jackson

• Palate

8:30 AM          Margaret Souders

• Postoperative Apnea – Caution: Sleep Impacts Everything!

8:40 AM           Meg Maguire

• Elective Surgery – Points to Ponder

8:50 AM                   Discussion

Session 10: Early Childhood Development

Moderators: Brenda Finucane and Ann Swillen

9:15 AM                   Brenda Finucane

• Symptoms Versus Causes

9:30 AM                   Ann Swillen

• Birth to Five
• The Developing Brain
• Motor Milestones versus Cognitive Ability
• The Autistic Spectrum
• Helping Children to Learn

10:00 AM                 Cindy Solot

• Delays in Emergence of Language – Overcoming Obstacles

10:15 AM                 Discussion

10:30 AM                 Coffee Break – Asbury Lobby

Session 11: Education – The School Years

Grand Harbor Ballroom South

Moderators: Barbara Haas-Givler and Ed Moss

11:00 AM         Barbara Haas-Givler

• Setting the Stage for Success: Effective Strategies to Enhance Social Skills

11:15 AM         Tony Simon

• Interventions Matter – Supporting Academic Achievements While Minimizing Stress

11:30 AM         Carrie Bearden

• The Brain can be Taught!

11:45 AM        Jennifer Janusz

• Executive Function Skills – Implications for Students

12:00 PM         Ed Moss

• Overcoming Academic Challenges Associated with Non-Verbal Learning Differences

12:15 PM                 Discussion

12:45 PM                 Lunch International Style! Asbury A-C

Session 12: The Brain, Behavior and Transitions to Adulthood

Grand Harbor Ballroom South

Moderators: Natalie Blagowidow and Sheila Kambin

1:30 PM                   Anne Bassett

• Treating the Treatable – Emotions, Behavior and Thinking

2:00 PM                   Raquel Gur

• Neuropsychiatric Features – Challenges and Approaches

2:15 PM                   Discussion

2:45 PM                   Solveig Oskarsdottir

• Educational Crossroads
• Independent Living
• Life Skills
• Parenting
• Grand Parenting

3:00 PM                   Natalie Blagowidow

• Reproductive and Genetic Counseling Questions and Answers

3:15 PM                   Discussion

3:30 PM                   Afternoon Tea – Asbury Lobby

Session 13: Two Sides of the Same Coin

Grand Harbor Ballroom South

Moderators: Solveig Oskarsdottir and Sixto Garcia-Minaur

4:00 PM                   Donna McDonald-McGinn

• Atypical 22q11.2 Deletions
• The 22q11.2 Duplication Syndrome

4:10 PM                   Ann Swillen

• Developmental Issues in children with 22q11.2 duplication syndrome

4:20 PM                   Cindy Solot

• Speech and language in children with 22q11.2 duplication syndrome

4:30 PM                   Discussion

Session 14: 22q – It’s Time You Knew – Rapid Fire Update

Grand Harbor Ballroom South

Moderators: Anne Bassett and Donna McDonald-McGinn

4:45 PM          Bernice Morrow

• State of the International 22q11.2 Consortium
• Developing an International Registry – Why and How

4:55 PM           Ann Swillen

• The Newly Established International Brain Behavior Consortium – How It Can Help

5:00 PM           Anne Bassett

• Healthcare Guidelines – Keeping Them Current and Available for All

5:05 PM           Hillary Joyce

• Standards in the United Kingdom

5:10 PM           Donna McDonald-McGinn

• Establishing Clinical Centers of Excellence

5:15 PM           Michelle Breedlove-Sells

• Resiliency Matters – And Awareness Too!

5:20 PM           Sheila Kambin

• United We Stand

5:25 PM           Carol Cavana

• Celebrating Success and Continuing to Work Together

5:30 PM           Discussion

6:00 PM          Closing Remarks 

 

Meeting Adjourns – Next Up? See you in 2014 in Mallorca, Spain!