GENETICS
7/18/2023
Innovative Genetics Navigator Program In Virginia
In 2022, teams were formed by the NYMAC (New York, Mid Atlantic and Caribbean) Regional Genetics Center in each of their region's states/territories to look at barriers faced by families seeking genetics testing such as limited genetic clinics, lack of genetic counselors and costs of genetic testing. To meet Virginia's needs, NYMAC's Virginia team worked with the Center for Family Involvement (CFI) at Virginia's UCEDD to launch a Genetics Navigator program. Through a network of 90 trained diverse, paid and volunteer family members across Virginia, the CFI has provided emotional, informational and systems navigational support to thousands of families each year whose children have developmental delays, disabilities and/or special health care needs.
1/20/2023
SPARK Uncovers Moderate-effect Genes that Cause Autism
A recent study at Baylor College of Medicine and Texas Children's Hospital-one of AUCD's Intellectual and Developmental Disability Research Centers or IDDRCs-used SPARK data to identify a new class of moderate-effect genes that are associated with less likelihood of intellectual disability and may reveal more about autism and brain development.
1/20/2020
Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) Introduces Genetic Counseling to its LEND Curriculum, Welcomes First Trainee from Inaugural Genetic Counseling Master's Program
Vanderbilt Kennedy Center's (TN IDDRC, UCEDD, LEND) Consortium LEND has seen a lot of change this year, including the installment of a new director, new program staff members, and growth within its cohort at East Tennessee State University. Among the changes is the addition of the genetic counseling discipline to LEND's Care Navigation practicum, thanks to LEND faculty member Laura Duncan, M.S., CGC, as well as its first long-term trainee from Vanderbilt's inaugural Master of Genetic Counseling program, Gianna Petrelli
11/18/2019
Kentucky UCEDD Collaboration at ASHG
Staff representing University Centers of Excellence in Developmental Disabilities collaborated to deliver a presentation at the annual American Society of Human Genetics meeting in Houston, TX on October 18. Dr. Kara Ayers, Associate Director of the University of Cincinnati UCEDD, and Stephanie Meredith, Medical Outreach Director at The University of Kentucky Human Development Institute joined Dr. John Constantino, Director of the Washington University in St. Louis Intellectual and Developmental Disabilities Research Center, Dr. Igna Van den Veyver a leading Maternal Fetal Medicine Specialist from Baylor College of Medicine; Katie Stoll, Executive Director of the Genetic Support Foundation; and Dr. Marsha Michie, an anthropologist from Case Western Reserve University to address the intersection of disability and genetics. This presentation was made possible by ASHG, in collaboration with the Association of University Centers and NICHD.
6/25/2019
Dedication, Hard Work, and Achievement: Honoring John B. Moeschler, MD, MS (NH ME LEND)
John B. Moeschler, MD, MS. is retiring from his role as Program Director for the New Hampshire-Maine Leadership Education in Neurodevelopmental Disabilities Program after 27 years of service from 1992-2019. As a developmental behavioral pediatrician and geneticist in NH, he served thousands of children and families with, or at risk for, intellectual and developmental disabilities (IDD) and trained hundreds of interprofessional leaders in high quality, innovative clinical care. In recognition of his many accomplishments, John was awarded Pediatrician of the Year by the NH Pediatric Society in 2012.
5/27/2019
Vanderbilt Kennedy Center (IDDRC, UCEDD, LEND) Researcher Sutcliffe, Others Find High-risk Genes for Schizophrenia
Author: Bill Snyder
Using a unique computational framework they developed, a team of scientist cyber-sleuths in the Vanderbilt University Department of Molecular Physiology and Biophysics and the Vanderbilt Genetics Institute (VGI) has identified 104 high-risk genes for schizophrenia. One contributor is Vanderbilt Kennedy Center (IDDRC, UCEDD, LEND) member and Associate Professor of Molecular Physiology & Biophysics and Psychiatry & Behavioral Sciences James Sutcliffe, Ph.D.
12/5/2018
IDHD Student Visits Wolfensberger Archives (UCEDD IL)
In the summer of 2018, the Institute on Disability and Human Development (IDHD) at the University of Illinois at Chicago, the UCEDD for Illinois, sent PhD student Drew Egli to visit the Wolfensberger Archives in Omaha, Nebraska. Wolf Wolfensberger is a prominent name in the field of intellectual and developmental disabilities, he is probably best known for his advocacy and research that contributed to the deinstitutionalization movement and to a paradigm shift towards community inclusion that brought a sea change in thinking about people with disabilities.
12/5/2018
Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) Member Receives $2.3 Million NIH Director's New Innovator Award
Reyna Gordon, Ph.D., assistant professor of Otolaryngology and a Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) member, has received a National Institutes of Health (NIH) Director's New Innovator Award of $2.3 million in total costs for her project, "Biomarkers of Rhythmic Communication: Integrating Foundational and Translational Approaches."
4/26/2018
Deconstructing Autism: from unitary syndrome to contributory developmental endophenotypes
A recent generation of family studies has revealed that autism can be predicted from an array of neurobehavioral susceptibilities that are appreciable before the syndrome is diagnosed, and that each may be traceable to partially-independent sets of genetic variation. Some of these liabilities are not necessarily specific to ASD-those that are non-specific could account for a significant share of the �missing heritability' of autism, would (by definition) contribute to pleiotropy, and relate to so-called �co-morbidities', which are inappropriately named if they actually contribute to (or exacerbate) the severity of autism itself.
10/3/2017
Interdisciplinary Genetics Competencies for LEND Trainees
As recommended by the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Genetics Workgroup
The purpose of this document is to serve as resource for LEND programs for those programs desiring to strengthen their genetics content. It is not intended to serve as a mandate or requirement, but rather to provide specific guidance in achieving basic and advanced competencies in genetics.
4/22/2016
Mark Your Calendars for AUCD 2016!
December 4-7 in Washington, DC
The AUCD 2016 Conference, "Navigating Change: Building our Future Together," highlights both the change that comes at the end of a Presidential term as well as our need to work together to create a future in which children and adults with disabilities are able to participate fully in all aspects of life as valued members of their communities. Join us to engage in powerful, important, and inspiring personal and professional discourse on December 4-7 in Washington, DC.
11/2/2015
The New England Genetics Collaborative Announces an Innovative Partnership with the Genetic Metabolic Center for Education (NH UCEDD/LEND)
The New England Genetics Collaborative (NEGC), a project housed at the Institute on Disability (IOD) at the University of New Hampshire, is pleased to announce a first-of-its-kind partnership with and the Genetic Metabolic Center for Education (GMCE) to create a consulting and educational platform able to support the diagnosis and treatment of inherited metabolic disorders throughout New England.
4/2/2015
AUCD2015: Submit a Proposal Today
Deadline: June 5
AUCD is currently accepting proposals for our 2015 conference. This call for papers includes submissions for concurrent interactive presentations, concurrent panel presentations, single presentations, and posters. Proposals are welcomed on a multitude of topics on all things disability, including but certainly not limited to advocacy, behavior supports, disability studies, employment, health and wellness, leadership development, self-determination, technology, and much more.
4/14/2014
AUCD Unleashed: The Power of Engagement
The 2014 AUCD Conference theme reflects our goal of achieving an elevated level of engagement with our respective and collective communities, networks, and well beyond in order to better inform, enhance, and enrich the work we all do to improve the lives of people with disabilities and their families. Ink your calendars, and make travel plans accordingly to participate in this engaging event that will serve in keeping our work relevant and our vision strong.
3/26/2013
AUCD 2013: You're Invited
Promoting Inclusion in an Increasingly Diverse World
This Conference theme promotes our network values of inclusion of all persons with developmental and other disabilities in community life and engages the network in conversation and practices to ensure our work reflects the changing cultural and linguistic landscape in our Centers and States.