Who We Are
Dup15q Alliance is a nonprofit 501(c)(3) corporation. It was founded under the name of IsoDicentric 15 Exchange, Advocacy and Support 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. 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. The organization's name was changed in 2011 to Dup15q Alliance to encompass the variations of the disorder known as chromosome 15q duplication syndrome. Today, there are over 600 families from around the world affiliated with Dup15q Alliance. The organization is a volunteer run organization supported by grants, donations and many hours of volunteer effort.
Mission
Dup15q Alliance 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, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q duplication syndrome.
Dup15q Alliance 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.
Dup15q Alliance matches parents seeking support with parent mentors who can provide emotional support.
Dup15q Alliance supports small regional meetings for families to network, share resources and support.
Dup15q Alliance conferences are held every other year to provide families with an opportunity to meet and learn about scientific and treatment advances.
www.dup15q.org
The BigTent 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 Dup15q Alliance.
The official Dup15q Alliance Facebook Page can be found at Dup15q Alliance.
The official Dup15q Alliance Twitter Page can be found @dup15q.
Promoting Research and Hope for Effective Treatments Through…..
Dup15q Alliance 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.
Dup15q Alliance 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 Dup15q Alliance. 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., MD
Department of Psychiatry
University of Illinois at Chicago, Chicago, IL
Brenda Finucane, MS, CGC
Elwyn Training and Research Institute, Elwyn, PA
Janine M. LaSalle, PhD
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, MD, PhD
Nemours Biomedical Research, Wilmington, DE
Sarah Spence, MD, PhD
Department of Neurology
Children’s Hospital Boston
Ron Thibert, DO, MsPH
Pediatric Epilepsy Program
Massachusetts General Hospital, Boston, MA
Any inquiries about Dup15q Alliance can be directed to:
Kadi Luchsinger
Dup15q Alliance Executive Director
855-dup-15qa
Dup15q Alliance Tax Identification Number is 20-0751232
Last Updated: July 2011
Board Chair
Executive Director
Vice President of Communications
Vice President of Finance
Corporate Secretary
Co-Founder and Board Member
Board Member
Board Member
Board Member
Board Member
Board Member
Board Member
Donna Bennett
Paul Karch
Rylie McHam
Linda Meagher
Patti Rubel
Dup15q Alliance, P.O. Box 674, Fayetteville, NY 13066 USA
855-dup-15qa info@dup15q.org
Policy Regarding Use of Dup15q Alliance Trademarks
The trademarks, logos, and service marks (“Marks”) displayed on this website, and related websites belonging to Dup15q Alliance, including the Dup15q Alliance logo, among others, are trademarks of the Dup15q Alliance, are the property of Dup15q Alliance, and are protected. Their uses are restricted to those programs and events sponsored by Dup15q Alliance, and Dup15q Alliance trademarks may not be used for personal financial gain. Use of the Marks is prohibited without the express written consent of Dup15q Alliance. Nothing contained on the Site should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Marks without the express written consent of Dup15q Alliance.
At times, Dup15q Alliance may grant limited-use licensing agreements to those individuals or groups who wish to help further the mission of Dup15q Alliance. Solely at the discretion of Dup15q Alliance, limited permission for use of Dup15q Alliance’s Marks may be granted for those projects which provide a substantial benefit to Dup15q Alliance or the chromosome 15q duplication syndrome community in general. For consideration, please submit, in writing, a letter of intent, which details how the Dup15q Alliance’s Marks will be used, the length of time they will be used, and the benefit of the project to Dup15q Alliance or the chromosome 15q duplication syndrome community to info@dup15q.org at least 45 days prior to launch.
Letters of intent may also be sent to: Dup15q Alliance, PO Box 674, Fayetteville, NY 13066, or send an e-mail to info@dup15q.org.
