Our Siblings Are Important!
The Chromosome 18 Registry has long recognized the importance of siblings in the well-being of our families. For people with a chromosome 18 condition, their siblings will likely be a part of their lives for much longer than will their parents. It is therefore incumbent on our organization to recognize and to foster these healthy relationships. And just as the parents of someone with a chromosome 18 condition benefit from friendships with the other parents, so do the siblings. For this reason, the Chromosome 18 Registry has over the years developed a program for siblings run by siblings. In fact, a speaker at the first Chromosome 18 family conference was Don Meyer, the founder of The Sibling Support Project who led our first workshops for siblings.
The recognition of the central role of siblings in the unique and atypical life led by the chromosome 18 families is not commonly appreciated or documented. Previously, Catherine Larson at the Chromosome 18 Clinical Research Center conducted a survey of chromosome 18 siblings in the early days of formalizing the program. This survey, performed more than a few years ago, is about to be published. However, today’s adolescent and young adult siblings were not a part of that study. Given the growth of the program, it is now time to reassess the chromosome 18 siblings’ perspective.
The Chromosome 18 Registry and Research Society along with the Chromosome 18 Clinical Research Center is partnering with the Genetic Counseling Program at Sarah Lawrence College and Positive Exposure to conduct a new survey of sibling perspectives and to highlight the strength and uniqueness of our sibling program. The Genetic Counseling Program at Sarah Lawrence College is one of the country’s most highly regarded genetic counseling programs. And Positive Exposure, of course, is led by everyone’s favorite photographer, Rick Guidotti with the help of Liz Grossman, mother to Talia who has 18q-.
We are encouraging any of our chromosome 18 siblings between 13 and 18 years of age to participate. This involves a one-time interview that will last approximately one hour. The interview will explore topics surrounding sibling relationships, parent support, family dynamics, social relationships, and mental health. During the interview, the siblings will also be asked to complete an anxiety/depression scale to understand how these diverse factors affect mental health. If you or someone you know are interested in participating in this study please fill out the quick survey linked below: https://www.surveymonkey.com/r/W9BJHGC
