Who We Are

IDEAS (Isodicentric 15 Exchange, Advocacy & Support) is a nonprofit 501(c)(3) corporation, incorporated in the state of Oregon. IDEAS was founded in 1994 by Donna Bennett, mother to Joshua (idic15) and Brenda Finucane, MS, CGC 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 non profit organization. Today, there are over 300 families from around the world affiliated with IDEAS. IDEAS is a completely 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 hope to find targeted treatments so that affected individuals can live full and productive lives. Working towards a better tomorrow for children with chromosome 15q duplication syndrome.

Providing 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 provide families with an opportunity to meet and learn about scientific and treatment advances.

Informative Website
www.idic15.org

Interactive Message Boards
www.idic15.org/messageboard/

Promoting Research and Hope for Effective Treatments Through…..

Scientific Meetings
IDEAS holds national research meetings on chromosome 15q duplications.

Collaboration with Researchers
IDEAS works with researchers to connect our families with research opportunities.

Human Tissue & Cell Line
Families are encouraged to consider donating cell lines and tissues so that researchers have access to these critical resources.

Advocacy
Together with our scientific advisors we advocate for additional research into chromosome 15q duplications so that one day targeted and effective treatments will be a reality.

Governance
A nine 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

Executive Director Kadi Luchsinger (Fayetteville, NY)
Board Chair Nicole Cleary (Portland, OR)
Corporate Finance Officer Lori George (Canton, MA)
Corporate Secretary Paula Davis (Westford, MA)
Co-Founder and Board Member Donna Bennett (Thomasville, PA)
Board Member Heather Bruce (Indianapolis, IN)
Board Member Len Poore (Tewksbury, MA)
Board Member Jane True (Kansas City, MO)
Board Member Frank Kobuszewski (Camillus, NY)

Professional Advisory Board members include

Edwin H. Cook, Jr., M.D.
Department of Psychiatry
University of Illinois at Chicago, Chicago, IL

Michael L. Cuccaro, PhD
Miami Institute for Human Genomics, Miami, FL

Brenda Finucane, MS, CGC
Elwyn Training and Research Institute, Elwyn, PA

N. Carolyn Schanen, M.D., Ph.D.
Nemours Biomedical Research, Wilmington, DE

Agantino Battaglia, MD, DPed, DNeurol
The Stella Maris Clinical Research Institute for Child and Adolescent Neurology and Psychiatry,
Calambrone (Pisa), Italy

Any inquiries about IDEAS can be directed to

Kadi Luchsinger, Executive Director
IDEAS
PO Box 568
Canton, MA 02021
1-888-64-IDEAS (1-888-644-3327)

IDEAS Tax Identification Number is 20-0751232

Last Updated: April 2, 2007