Registry News

A Mother’s Love Leads to Research Center

Jannine Cody was heartbroken when her daughter was born with a rare, largely unstudied, genetic abnormality. Determined to learn more, she formed a family support group, earned her Ph.D. and began a research career.

Read more here…

Chromosome 18 Research Center Virtual Tour

Please join us on this 20 minute virtual tour of our Research Center facilities.


The Chromosome 18 Registry & Research Society receives a $20,000 donation from Valero Companies…

The Chromosome 18 Registry & Research Society receives a $20,000 donation from Valero Companies from funds raised through the 2016 Benefit for Children Golf Tournament. Pictured here are Troy Haby – Director Corporate Sponsorship’s at Valero Energy, Leah Gransbery, Joe Gorder – Chairman, President & CEO Valero Energy, and Neale Parker. Thanks for such amazing generosity to Chromosome 18 Registry. Our sincerest thank you to Valero Companies for this donation!



The Chromosome 18 Registry and Research Society Member, Emily Sutton, Blogs for Firefly.

“We have built up a wonderful network of families with whom we share, advise, celebrate and cry.

By lending support and sharing experiences we are all able to guide our children’s lives so that they have the health care, education and support that they deserve.

We are united in providing each other with a platform for sharing emotionally, clinically and practically what we simply cannot get from clinicians, professionals, and quite frankly, sometimes even our own friends and family.”

Read more here…



Jenny Howe

2015 Conference Chairperson and Registry member, Jenny Howe, is interviewed by CNN.

“Howe is the 2015 conference chair for the Chromosome 18 Registry and Research Society. Before that, she worked as a psychologist for 15 years, working with kids who constantly told her that they felt judged for looking different.

She hopes that the positive imagery in “On Beauty” will change that for future generations.”

Read more here…





emerson-photo-c18-conference-2014Canadian Members, Michelle and Emerson, talk about what The Registry means to them in this blog about community giving.

“The Registry is dedicated to providing the latest in medical and scientific research on the syndromes of chromosome 18 with a goal to “making chromosome 18 conditions the first treatable chromosome abnormalities.” Despite its global reach, it really is a local community composed of the parents of individuals with a chromosome 18 abnormality.”

Read more here…


ReelAbilities Chicago squareIllinois Member, Kelly Collins, Speaks at ReelAbilities Film Festival 

Our Director of Individual Fundraising, Kelly Collins, mom to Adele 18q-, was asked to speak on a discussion panel at the ReelAbilities Film Festival following the Chicago viewing of the documentary film “On Beauty.”  ReelAbilities Film Festival is the largest film festival in the United States dedicated to sharing human experience of disability through art and film.

Read more here…





Chromosome 18 Featured in ‘Interaction!’


Registry member and editor of the publication ‘Interaction‘, Dr. Veronica Wain, recently published 3 articles in which chromosome 18 is highlighted.  ‘Interaction’ is the journal of The Australian Institute on Intellectual and Developmental Disabilities.  It is the national and leading voice for issues relating to developmental disabilities in Australia.  With contributions from these authors, she has published the following articles:


Tim Steenson (Self-Advocate, 18p-)- How Sickness Changes Your Life
Dr. Veronica Wain (mother of Allycia Staples, 18q-)- Through a Different Lenses -‘On Beauty’ The film by Rick Guidotti
Camilla Downs (mother of Thomas Darnell, 18p-)- The Gift of One 



This is the only time when 3 chromosome 18 related articles, with Australian and American representations, have come together in a major publication that is read by organizations, families, and professionals working in developmental disabilities.  The chromosome 18 articles in this journal will have a positive impact for all our families and the Registry.


We would like to thank Dr. Wain for all the time and hard work she commits on a personal and professional level to get information on chromosome 18 conditions out in the community.  We are grateful to have someone with her understanding, commitment, and expertise within our Registry.  We would also like to thank her for allowing us to distribute these articles to our members.  If you loved these articles and would like to read more, please consider subscribing to ‘Interaction’ by visiting this link!  ‘Interaction’ also encourages people with intellectual and developmental disabilities to submit their creative works for publication consideration.  If you have work that you would like to submit, please contact the editor, Dr. Veronica Wain.


Longtime attendant keeps Packers on their toes, works his way into hearts

Registry member and self-advocate, Andy Gruber is honored in this ESPN article as he reaches a milestone 20 years of service with the Green Bay Packers.  Read more here…