Registration closes on July 5th, 2021 at 11:59 PM
See full details and conference schedule below!
All conference times are in US Central Time.
General Information
New name, new virtual location, same fun-filled conference! We are celebrating the 28th Anniversary of the Chromosome 18 Annual Conference this year under a new name, Chromosome 18 Closer Than Ever Virtual Conference. The 2021 Virtual Conference will be help on a new online platform called Hopin from Sunday July 11th through Tuesday July 13th.Hopin is an immersive virtual event space that offers all the same features you would find at our in-person event. From the Hopin lobby, you will be able to choose which session you would like to attend, connect one-on-one with other people using the networking feature, pop in and out of virtual dinner tables and say hi to other families during the final night dinner, and even participate in the final night dance party! Find out more about the Hopin attendee experience here.
Over the course of the two-and-a-half days, there are numerous different speaks and panels available including four tracks of presentations for families of young children, families of adolescents/young adults, self-advocates, and siblings. There will be several sessions with presentations from medical experts who provide detailed information on specific topics such as movement disorders, autism and relationships, COVID-19, and managing difficult behavior. The sibling panel will allow family members and siblings to tune into a moderated discussion of the sibling experience and ask questions of siblings that have been involved with Chromosome 18 for years. The self-advocate panel will be comprised of affected individuals over 16 who can speak function independently within the virtual conference environment and is available to other affected individuals and families as a platform to ask questions and learn more about the self-advocate experience. There will also be breakout sessions for each syndrome group and regional groups, as well as a princess sing-along, a drumming session, and yoga for everyone to enjoy.
The conference culminates on Tuesday evening with the Starfish Family Fun Night and Table Touring, where you can see familiar faces and make new friends just like at an in-person event. The Family Fun Night is open to all attendees, and those interested in purchasing and hosting their own family table can register here, or click the link below. The night will conclude with the virtual Starfish Dance Party, where you will be able to dance the night away with other families from all around the world.
Schedule
2021 Conference Tentative Schedule | View / Download [Type: PDF | Size: 599KB]
2021 conference Committee
Conference Chairs – Meredith Moore & Keri Lamont, office@chromosome18.org
2021 conference Speakers
Neale Parker
Welcome/Introduction, July 12th 10:00 AM
Neale Parker has been Executive Director of the Chromosome 18 Registry & Research Society for over 4 years. With over 20 years of experience with working with Not For Profits (NFP) in the varied capacity of staff, board chair, board and volunteer, he brings a unique experience to running this wide reaching organization.
Rick Guidotti
Positive Exposure, July 12th 10:45 AM
Rick Guidotti, an award-winning photographer, has spent the pasttwenty five years collaborating internationally with non profit organizations, hospitals, medical schools, educational institutions,museums, galleries, advocacy groups and communities to effect asea-change in societal attitudes towards individuals living withgenetic, physical, behavioral or intellectual difference; his work has been published in newspapers, magazines and journals as diverse asElle, GQ, People, the American Journal of Medical Genetics, TheLancet, Spirituality and Health, the Washington Post, Atlantic Monthlyand LIFE Magazine.
Dr. Jennifer Manganello
Health Literacy, July 12th 12:00 PM
I am a Professor at the University at Albany School of Public Health. My main area of expertise is health communication. I also study health literacy, or how to navigate health care, and the useof digital technology for health information and health programs,also known as eHealth. I am a mom with two sons, one of whom has been diagnosed with 18q deletion.
Dr. Sid Atkinson
Movement Disorders, July 12 12:00 PM
Sid Atkinson, M.D. is a Child Neurologist who retired from the military after a long and successful career to embark on a new venture as the chief of the child neurology service at the University of Texas Health Science Center at San Antonio. Dr. Atkinson co-founded the Chromosome 18 Registry and Research Society.
Dr. Paul Niolet
COVID-19, July 12th 1:00 PM
Dr. Paul D. Niolet is board certified in Allergy and Immunology, Pediatrics, and Internal Medicine. He completed his fellowship in Allergy and Immunology at LSU Health and Sciences Center in New Orleans in 2007. Much of his training was performed at Children’s Hospital, which is a Jeffery Modell Diagnostic Center for Primary Immunodeficiencies. The goal of these centers is to increase awareness of primary immunodeficiencies (PI) and to offer early screening and diagnosis of PI.
Dr. Catherine Larson
Managing and Treating OCD, July 12th 1:00 PM
Catherine Cody Larson, M.D. is a Child and Adolescent Psychiatrist and (more importantly) Elizabeth Cody’s sister.After earning her undergraduate degree in Communications at Texas State University, she worked as a Research Assistant at the Chromosome 18 Clinical Research Center in San Antonio. During this time, she conducted research on relationships between individuals with chromosome 18 syndromes and their siblings. She was the past sibling coordinator and has been organizing sibling activities at the conferences for over 10 years.
John McGing
Social Security Disability: Getting & Keeping It, July 12th 1:00 PM
John McGing is retired after 38 years working for the Social Security Administration. During that time he held a number of jobs related to Social Security and Supplemental Security Income benefits. He is married to Marie, and they have adaughter Caitlin, and a son Sean, who has Tetrasomy 18p. John has also been a member of the Board of the Chromosome 18 Registry and currently volunteers as a member of the Maryland State Advisory Council on Hereditary and Congenital Disorders.
Dr. Daniel E. Hale
Research Update July 12th, 2:00 PM
Daniel E. Hale, M.D., is a tenured Professor of Pediatrics at The University of Texas Health Science Center at San Antonio where he holds the following positions; Chief of Pediatric Endocrinology and Diabetes; Medical Director of the pediatric clinical research unit and Interim Director of the Clinical Research Unit at the UT Regional Academic Health Center inHarlingen, TX. He also serves as the Medical Director for the Chromosome 18 Research Center and for the Chromosome 18 Registry and Research Society.
Dr. Jannine Cody
Research Update July 12th, 2:00 PM
Jannine De Mars Cody, Ph.D., is a Professor in the Department of Pediatrics at the UT Health Science Center where she serves as Director of the Chromosome 18 Clinical Research Center. In 1990, Jannine founded the Chromosome 18 Registry and Research Society as a way to bring affected families together and to learn from each other. While pursuing her Ph.D., she developed the multidisciplinary Chromosome 18 Clinical Research Center.
Mike Perrello
Magician, July 12th 3:00 PM
Mike Perrello specializes in fun family entertainment with an action packed, high energy comedy magic show. Whether he is performing for a School, Child’s Birthday, Festival, Company Picnic, Cub Scout Banquet, Holiday Party or whatever your event is, Mike’s blend of comedy and visual magic has his audiences laughing and keeps them captivated the entire time.
Dena Goldberg
Genetics for Siblings, July 12th 3:00 PM
Dena Goldberg, MS, CGC is a genetic counselor living in Los Angeles working on bringing genetics and genetic counseling to mainstreammedia and becoming the first TV genetic counselor. She previously served as the Gordon and Betty Moore Endowed Counselor of Hereditary GI Cancer Prevention at University of California, San Francisco (UCSF) and has worked with several major genetic testing laboratories.
Ann Newstead
Yoga, July 12th 3:45 PM
Ann H. Newstead is a physiotherapist with a variety of experiences in rehabilitation. She owns a private practice near San Antonio, TX with focus on older adults. She is a certified specialist through the American Physical Therapy Association in Geriatrics (2005-2025).
Dr. Ed Brooks
Autoimmune Disorders, July 12th 4:45 PM
Dr. Brooks is a Professor of Pediatrics and Internal Medicine atthe University of Texas Health Science Center San Antonio. He is a specialist in Allergy, Asthma, Immunology and Rheumatology and has collaborated with the Chromosome 18 project for the last 5 years. He has research interests in environmental effects on airway inflammation and the mechanisms of immune disorders.
Dr. Jonathan Mason
Managing Difficult Behavior, July 12th 4:45 PM
Associate Professor Jonathan Mason is Director of the USC Psychology Clinic and Head of Psychology at the University of the Sunshine Coast in Queensland, Australia. His clinical work has been predominantly with people with an Intellectual Disability, with a focus on those with severely challenging behaviour. He has published widely in the field of disability, and his recent research has focused on the relationship between behaviour, family functioning, sleep and mental health in people with Chromosome 18 disorders.
Jennifer Sanders
Therapeutic Music, July 12th 4:45 PM
Jennifer Sanders is a board certified music therapist serving central Maryland. A Virginia native, she earned her bachelor’s degree in music therapy and a minor in psychology from Shenandoah University, and completed her internship at theA nn Storck Center in Ft. Lauderdale, Florida.
Morgan Kelso
Princess Sing Along, July 13th 10:45 AM
Morgan has many years of experience performing on-stage inmusical theatre & opera productions, in addition to classical solo, collegiate a cappella, and choral ensemble performances. Additionally, Morgan has taught students of all ages (PreK – HighSchool), in the area of music as well as core subjects. She has volunteered at various summer camps and music outreach programs over the past several years.
Kate E. Reynolds
Puberty: The When, What, and How, July 13th 11:45 AM
Kate E. Reynolds MDS, PGDC, PGDHE, BSc (Hons) SA, RGN is a singlemother to two young people on the autism spectrum, one of whom has intellectual/learning disabilities. Kate has written 11 books, mostly published by Jessica Kingsley Publishers about aspects of relationships, sexuality and disability. She is writing a three-book series about sexual health for adults with autism andintellectual/learning disabilities for Hachette publishers, due for publication in 2021 and 2022.
Susan Hoss
Look, Cook, and Eat July 13th 12:00 PM
Sue is co-founder of Look, Cook, and Eat (lookcookandeat.com), anonline resource designed to help teach people with learning differences how to cook and be more independent in their daily lives.
Jaclyn Hunt
Autism/Relationships, July 13th 1:00 PM
Jaclyn Hunt is a life coach specializing in working with adults on the autism spectrum. She and her team focus on real life skills training. These skills include but are not limited to social skills, communication skills, independent living, college/career development, executive functioning skills and building healthy relationships from the ground up.
Website: https://www.asnlifecoach.com/
Amanda Batsche
Estate Planning, July 13th 1:00 PM
As a lawyer and mother, Amanda is on a mission to educate parents on the legal documents they need to protect their families. She earned her undergraduate degree at Texas A&M University and went on to St. Mary’s University in San Antonio tocomplete her law degree. Amanda is licensed to practice law in the State of Texas and is certified by the state bar to practice guardianship law.
Kristen Earl
Outdoor Occupational Therapy, July 13th 1:00 PM
Kristen Earl has worked as an Occupational Therapist for 8years in Skilled Nursing Facilities, Home Health and Acute Caresettings. She is a mom to 3 kids- all 3 with different needs -Kaylyn (21) with chromosome 18, Nathan (19) has Autism andAnxiety/Depression, Jacob (16) ADHD. She has many years ofSLP/PT/OT with all 3 children.
Kristen Earl Outdoor Occupational Therapy, July 13th 1:00 pm
Silent Auction Donations
2021 Closer Than Ever – Annual Family Virtual Conference – Online Auction Donation | Complete Google Form here
Starfish Family Fun Night and Table Touring Sign-Up
Starfish Family Fun Night and Table Touring Information | Complete Google Form here
Chromosome 18 Clinical Research Center Information
For any questions about the Chromosome 18 Clinical Research Center or how to sign up for the registry, please contact Annice Hill at 210.567.5321 or HillA3@uthscsa.edu. Learn more about the Chromosome 18 Clinical Research Center here
Conference Frequently Asked Questions
Please see frequently asked questions about the virtual conference and Hopin here [Type: PDF | Size: 139KB]
Last Year’s Conference Review
Closer Than Ever – 2020 Chromosome 18 Virtual Conference | Review
2021 Chromosome 18 Virtual Conference Archive| Here
Additional Information
The countdown is on to the Chromosome 18 Closer Than Ever Virtual Conference to be held July 11-13, 2021. This is an international, virtual conference. Families from around the world are welcome to participate!- Sunday, July 11: Afternoon to Early Evening (Platform Overview, Attendee Meet & Greet)
- Monday, July 12-13: Full Days (Conference Sessions, Breakouts, Panels, Networking)
- Syndrome & Regional Breakout Sessions
- Sibling & Self-Advocate Panels
- Small Group Discussions
- One-on-One Networking
- Live Questions & Answers
- Speakers & Topics chosen by our members