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.
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.”
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.”
“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.”
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.
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…