Occasionally, the Chromosome 18 Registry & Research Society is featured in a magazine or a news publication. Here, you will find links to these articles. We also use this page to share the accomplishments of our members!
Neve Mortimer and her entire family has been featured in a wonderful news article in the Evening Express. Neve has ring 18, and her family is involved with the Registry. You can read the article here!
George Donlan's family is organizing a walk as well as a music and comedy evening in their hometown of Manchester, UK. George has ring 18, and the proceeds will be donated to the Registry!
Fundraising Push for Youngster with Rare Disorder
Victor Pauca has Pitt-Hopkins syndrome. He is a remarkable young boy-he's been able to walk since he was 2 years old! However, he still struggles with communication. His father has developed an Apple app to help him communicate with others! The app, called VerbalVictor, will be available in the iTunes store in December 2010 or January 2011. To read more, follow this link:
Father's App Lets Disabled Son 'Speak' Through iPad
Abby Howe is big sister to Deakon, who has Ring 18. This year, she is designing a tree to be displayed in the Festival of Trees in Sandy, Utah, and dedicating it to her little brother! The book will have a "Goodnight Moon" theme, which is one of Deakon's favorite books, and will also feature characters from his favorite television show, "Yo Gabba Gabba!" Read all about it here:
Festival of Trees: Farmington girl pays tribute to little brother
Autumn Hebert, eleven years old, is big sister to Luke Ritchie (six) who has Tetrasomy 18p. Recently, Autumn's submission of a drawing about Luke and the family to the August 2010 issue of The Tennessee Magazine won 3rd place in her age group. She called her submission, "What if Luke Could Talk?" and she promently displayed her rendition of the Chromosome 18 logo! Thank you, Autumn, for your wonderful art, and for donating your monetary winnings to The Registry!
John Curtin, Registry member and adult with 18q-, has recently been appointed to the board of the Connecticut Council on Developmental Disabilities. He will be advocating for people with disabilities. Way to go, John! We're sure that you will do great things!
One of our members competed in the Scripps National Spelling Bee this year! In the photo, Kevin is spelling the word "catoptromancy". He spelled this word, as well as "echelon", but he did not qualify for the semi-finals based on his combined score (oral and written). Kevin, 13, represented his school, city, and county with style and sportsmanship. His family is especially proud of him, as they know the bumpy road he has traveled.
Local speller out, but enjoying trip
Dr. Cody talks about the treatment of chromosome conditions in this article about a child with ring 18.
Rare Disorder Leaves Teen Prone to Heart Attacks
The Daily and Sunday Express, based in the United Kingdom, has a story about a child with ring 18.
Our Baby Girl is One in a Million
Dr. Cody's story is told in a great article in Time Magazine.
Savior Parents
In 2001, The Chromosome 18 Registry & Research Society was featured in Wired Magazine.
The Citizen Scientists