Dinner at Spaghetti Warehouse, 397 W. Broad Street,Columbus Oh 43215  

If you are in town Friday evening, join us for food and friendship. Reserve your spot by registering on line or on this form.  Dinner cost underwritten by an anonymous donor.

 

 

7:30 a.m.          Check In

8:00 a.m.          Welcome

                        Richard Kirschner, MD

                        Michelle Breedlove-Sells

8:15 a.m.          Change How You See, See How You Change

                        Rick Guidotti

9:15 a.m.          Self-Concept of Our Children

                        Candice Crerand, PhD

9:25 a.m.          Everyone Has a Gift - Help Your Child Find Theirs

                        Tessa Koller

9:55 a.m.          Question and Answer Period

10:10 a.m.        Break

10:30 a.m.        22q Fast Facts and Updates Panel

                        Psychiatry:  Richard Gilchrist, MD

                        Cardiology:  Jessica Bowman, MD

                        Bleeding Disorders in 22q:  Riten Kumar, MD

                        Vaccine considerations for 22q:  Peter Mustillo, MD

                        Pulmonology Disorders in 22q:  Chandar Ramanathan, MD

                        Sleep Disorders and Management in Children with 22q:  Mark Splaingard, MD

11:45 a.m.        Lunch in the Park:  A 22q BBQ

1:15 p.m.          Rountable Briefing

1:30 p.m.          Live Roundtables

                        30 minute roundtable discussion with local and national experts.  Every participant

                        will have the opportunity to attend all chats. Groups are divided by age of child - young child,

                        school-age and teens.  Selected chats will be broadcast.

                        Velopharynegeal Dysfunction/Speech

                        Richard Kirschner, MD

                        Adriane Baylis, PhD, CCC-SLP

                        Feeding, Airway and Hearing

                        Lauren Madhoun, MS, CCC-SLP

                        Jonathan Grischkan, MD

                        Behavior/Development/Mental Health

                        Katherine Steingass, MD

                        Canice Crerand, PhD

                        Richard Gilchrist, MD

                        General Medicine and Care Coordination

                        Scott Hickey, MD

                        Katherine Eastman, MSW,LSW

                        Nancy Neal, BSN,RN,CPN

                        Courtney Hall, MS,CPN

4:15 p.m.          Coming Together Video:  Photos and Fashion

4:30 p.m.          Adjourn

 

8 a.m.               Icebreaker

8:15 a.m.          Social Skills/Anne Marie Polovik, MS,CCC-CLP

9 a.m.               Art Activity/Katherine Eastman, MSW,LSW

9:30 a.m.          Yoga/Kristin Tobin, OTR/L

10:30 a.m.        Habits of Effective Teens

11:45 a.m.        Lunch in the Park:  A 22q BBQ

1 p.m.               Dog Visit

1:30 p.m.          If You Can Dream It: You Can Be It

                        Tessa Koller

3 p.m.               Team Building Games

4:15 p.m.          Coming Together Presentation:  Photos and Fashion

4:30 p.m.          Adjourn

 

8 a.m.               Icebreaker

8:30 a.m.          Yoga/Kristin Tobin, OTR/L

9:15 a.m.          Kids on the Block Puppets:  Burn Safety

9:45 a.m.          Hog Mollies

10:45 a.m.        Just Flash

11:45 a.m.        Lunch in the Park:  A 22q BBQ

1 p.m.               Free play

1:30 p.m.          Dog Visit

2 p.m.               Music time

3 p.m.              The Super Hero In You

                        Tessa Koller

4:15 p.m.          Coming Together Presentation:  Photos and Fashion

4:30 p.m.          Adjourn

 

 

Children in the Pre-K group will have structured activities such as story time, movement, music and crafts, but will also be allowed plenty of free play.  Children must be age 3 or older and toilet trained.

 

Rick Guidotti, an award-winning former fashion photographer, has spent the past fifteen years working internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic difference; his work has been published in newspapers, magazines and journals as diverse as Elle, GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and Life Magazine. Rick is the founder and director of Positive Exposure, an innovative arts, education and advocacy organization working with individuals living with a difference or disability.  Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights.

 

Positive Exposure photographic exhibition premiered at the People's Genome Celebration, June 2001, at the Smithsonian's National Museum of Natural History in D.C. and continues to exhibit in galleries, museums and public arenas internationally. Rick Guidotti's Positive Exposure photo and video presentation explores the social and psychological experiences of people living with genetic, physical, cognitive and behavioral conditions of all ages and ethno-cultural heritages.  Rick's presentation celebrates the richness and beauty of human diversity. Positive Exposure provides new opportunities to see individuals living with a physical or cognitive difference, first and foremost as a human being with his/her own challenges rather than as a specific diagnosis/disease entity.

CHANGE HOW YOU SEE, SEE HOW YOU CHANGE!

 

Tessa Koller grew up in suburban Chicago.  Born with 22q, from the earliest days of her life she faced remarkable health and educational challenges.  Today, though, she is living out her lifelong dream and is a fashion entrepreneur, skilled designer, photographer and loves art.  Drawing and illustrating are a few things that she did all throughout her life and moved to Milwaukee to pursue a career in the arts in college.  She holds a Bachelor in Fine arts defree from the Milwaukee Institute of Art and Design where she studied drawing, illustrating and took photography and fashion design courses on the side.  After college, she took on fashion and developed her brand:  Tess Koller unique ready-to-wear fashions.  Tessa travels the world, collaborates regularly with several organizations and inspires, motivates, and moves large audiences of people through her motivational speaking.

 

Co-Director, 22q Center, and Director, Velopharyngeal Dysfunction Program, Plastic and Reconstructive Surgery, Nationwide Children's Hospital

Pediatric Cardiologist, The Heart Center, Nationwide Children's Hospital

Executive Director, Dempster Family Foundation

Psychologist, Center for Biobehavioral Health, Nationwide Children's Hospital

Social worker, Plastic and Reconstructive Surgery, Nationwide Children's Hospital

Child and Adolesscent Psychiatrist, Behavioral Health Sciences, Nationwide Children's Hospital

Otolaryngologist, Department of Otolaryngology, Nationawide Children's Hospital

Pediatric Nurse Practitioner, Plastic & Reconstructive Surgery, Nationwide Children's Hospital

Geneticist, Section of Molecular Genetics, Nationwide Children's Hospital

Co-Director, 22q Center, and Chief, Reconstructive and Plastic Surgery, Nationwide Children's Hospital

Hematologist, Hematology/Oncology Department, Nationwide Children's Hospital

Speech Language Pathologist and Feeding Specialist, Nationwide Children's Hospital

Section of Infectious Diseases and Allergy and Immunology, Nationwide Children's Hospital

Team Coordinator, Cleft Lip and Palate Center, Nationwide Children's Hospital

Speech-Language Pathologist, Nationwide Children's Hospital

Pulmonologist, Division of Pulmonary Medicine, Nationwide Children's Hospital

Director, Sleep Disorders Center and Director, Neurosciences Center, Nationwide Children's Hospital

Developmental and Behavioral Pediatrician 22q Center and Developmental-Behavioral Pediatrics, Nationwide Children's Hospital

Occupational Therapist, Nationwide Children's Hospital