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 . . .

Newsletter
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.

Parent Match Program
IDEAS matches parents seeking support with parent mentors who can provide emotional support.

Regional Family Gatherings
IDEAS supports small regional meetings for families to network, share resources and support.

International Conferences
IDEAS Conferences are held every other year to provide families with an opportunity to meet and learn about scientific and treatment advances.

Informative Website
www.idic15.org

Interactive Listserve
Inverted-Dup15@yahoogroups.com

Promoting Research and Hope for Effective Treatments Through…..

Scientific Meetings
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.

Collaboration with Researchers
IDEAS works with researchers to connect our families with research opportunities and expand research into chromosome 15q duplication syndrome.

Human Cell Line & Tissue Repositories
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 include

Board Chair Nicole Cleary, M.S.S. (Portland, OR)
Executive Director Kadi Luchsinger (Fayetteville, NY)
Corporate Finance Officer Lori George (Canton, MA)
Corporate Secretary Paula Davis (Westford, MA)
Co-Founder and Board Member Donna Bennett (Thomasville, PA)
Board Member Rachel Doucette (Georgetown, MA)
Board Member Frank Kobuszewski (Camillus, NY)
Board Member Len Poore (Tewksbury, MA)
Board Member Cindy Johnson (Wrightstown, NJ)
Board Member Michele Hughes (Cincinnati, OH)
Board Member Tom Doyle (Bellevue, WA)
Board Member open

Scientific and Professional Advisors include

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

Any inquiries about IDEAS can be directed to

Kadi Luchsinger
IDEAS
1-888-64-IDEAS (1-888-644-3327)

IDEAS Tax Identification Number is 20-0751232

Last Updated: February 24, 2009