Who We Are
IDEAS (Isodicentric 15 Exchange, Advocacy & Support) is a nonprofit 501(c)(3) corporation. It was founded in 1994 by Donna Bennett, mother to Joshua (a young man with idic15) and Brenda Finucane, MS, CGC the Director of Genetic Services at Elwyn Inc. IDEAS started as a list of 13 families raising children with chromosome 15q duplications. The support group grew and in 2004 it was officially incorporated into a nonprofit organization. Today, there are over 400 families from around the world affiliated with IDEAS. IDEAS is a volunteer run organization supported by grants, donations and many hours of volunteer effort.
Mission
IDEAS provides family support and promotes awareness, research and targeted treatments for chromosome 15q duplication syndrome. Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, IDEAS is working towards a better tomorrow for children with chromosome 15q duplication syndrome.
IDEAS Provides Information, Education and Support to Families Through . . .
The MIRROR is published quarterly to educate families about duplications of chromosome 15q, share family stories, and provide information about treatment options and current research.
IDEAS matches parents seeking support with parent mentors who can provide emotional support.
IDEAS supports small regional meetings for families to network, share resources and support.
IDEAS Conferences are held every other year to provide families with an opportunity to meet and learn about scientific and treatment advances.
www.dup15q.org
This online community is created to bring together those affected buy chromosome 15q duplication syndrome to share information, stories and ideas. These duplications most commonly occur in one of two forms which collectively can be grouped under the umbrella of the dup(15) syndrome diagnosis. These include an extra isodicentric 15 chromosome, abbreviated idic(15), or an interstitial duplication 15. We are here to make friends, support each other and help do our best for the ones that we love.
This online community is available to registered members of IDEAS.
Promoting Research and Hope for Effective Treatments Through…..
IDEAS holds national research meetings on chromosome 15q duplications to coordinate and promote additional research into chromosome 15q duplications so that one day targeted and effective treatments will be a reality.
IDEAS works with researchers to connect our families with research opportunities and expand research into chromosome 15q duplication syndrome.
The Human Genetic Cell Repository at the Coriell Institute for Medical Research holds a collection of chromosome 15q duplication cell lines for use in research. Families are encouraged to donate cell lines to this collection.
Upon the death of an individual with chromosome 15q duplication syndrome, families are encouraged to consider donating brain and tissues of the deceased to the Autism Tissue Program to expand these vitally needed resources for research.
Governance
A twelve member Board of Directors is responsible for determining the organization’s mission and purpose, ensuring adequate resources and financial oversight, and overseeing the programs and services provided by IDEAS. The board delegates responsibility for day-to-day operations to the corporate officers and committees. A Professional Advisory Board provides medical and research expertise.
Board Members
Scientific and Professional Advisors
Agotino Battaglia, MD, DPed, DNeurol
The Stella Maris Clinical Research Institute for Child and Adolescent Neurology and Psychiatry
Calambrone (Pisa), Italy
Edwin H. Cook, Jr., M.D.
Department of Psychiatry
University of Illinois at Chicago, Chicago, IL
Brenda Finucane, MS, CGC
Elwyn Training and Research Institute, Elwyn, PA
Janine M. LaSalle
Medical Microbiology and Immunology
UC Davis School of Medicine, Davis, CA
Lawrence T. Reiter, Ph.D.
Department of Neurology
University of Tennessee Health Science Center, Memphis, TN
N. Carolyn Schanen, M.D., Ph.D.
Nemours Biomedical Research, Wilmington, DE
Ron Thibert, DO, MsPH
Pediatric Epilepsy Program
Massachusetts General Hospital, Boston, MA
Any inquiries about IDEAS can be directed to:
Kadi Luchsinger
IDEAS Executive Director
info@dup15q.org
1-877-IDEAS15
IDEAS Tax Identification Number is 20-0751232
Last Updated: November 2009
Board Chair
Executive Director
Corporate Finance Officer
Corporate Secretary
Co-Founder and Board Member
Board Member
Board Member
Board Member
Board Member
Board Member
Board Member
Board Member
Nicole Cleary, MSS., MLSP (Portland, OR)
Kadi Luchsinger, BS, PT (Fayetteville, NY)
Tom Doyle (Bellevue, WA)
Paula Davis (Westford, MA)
Donna Bennett (Thomasville, PA)
Rachel Doucette, MS, RD, LDN (Georgetown, MA)
Michele Hughes (Cincinnati, OH)
Cindy Johnson (Wrightstown, NJ)
Frank Kobuszewski , Jr (Camillus, NY)
Len Poore (Tewksbury, MA)
Karen Sales (Ankeny, IA)
Position Open
IDEAS P.O. Box 674, Fayetteville, NY 13066 USA
1-877-IDEAS15 (1-877-433-2715)
info@dup15q.org
