One day PEOPLE WITH DOWN SYNDROME WILL LEAD THE WAY.

One day BREAKTHROUGH TREATMENTS AND THERAPIES WILL COME.

One day starts today.

Mission

DownSyndrome Achieves works to maximize the health and potential of every individual with Down syndrome by championing the development of critical research capabilities needed to better understand Down syndrome and to accelerate breakthrough discoveries.

Vision

At DownSyndrome Achieves, we believe that people with Down syndrome will lead healthier, more active and independent lives tomorrow through the results of breakthrough translational research made possible today. That's why we work collaboratively with Down syndrome research organizations and the community to fully develop critical research initiatives.

This includes:

  • - Establishing a biobank dedicated to Down syndrome
  • - Promoting the DS-Connect Health Registry
  • - Sharing with the community about research needs & benefits

We envision a world where people with Down syndrome no longer face the health concerns they do today. Imagine a future that includes preventative care to protect people with DS from Alzheimer's Disease, childhood leukemia or heart defects, or provides therapeutic options so that these conditions, and others, can be safely and effectively treated. This is our vision and hope, and we are working to make this a reality for all people.

The DownSyndrome Achieves DS Biobank will be launched in phases:

PHASE 1

  • Approved IRB—The NCH Institutional Review Board reviewed and approved all scientific protocols for the DownSyndrome Achieves DS Biobank blood collection initiative, supporting our commitment to the highest research standards and ethics.
  • Statement of Work between DownSyndrome Achieves & Nationwide Children's Hospital—The DownSyndrome Achieves DS Biobank is located at Nationwide Children's Hospital's (NCH) Biopathology Center (BPC) in Columbus, Ohio. The NCH BPC has over 20 years of biobanking experience and will maintain the day-to-day business of handling and managing the samples our community has donated. DownSyndrome Achieves follows the industry standard practice of having sole legal authority over the DS Biobank and its samples.
  • First Clinical Collection Site at NCH
  • Biobank Oversight Committee created—The DownSyndrome Achieves DS Biobank is governed by a DS Biobank Oversight Committee comprised of researchers, parents of people with Down syndrome, and self-advocates.
  • Scientific Advisory Panel Created—The Scientific Advisory Panel advises on issues related to biobank operations and potential DS research initiatives.
  • Small scale collection of blood samples to test biobank collection processes and operations.

PHASE 2

  • Onboard second clinical collection site (Q3, 2016)
  • Align DS Biobank as a research complement to the DS-Connect® registry
  • Development of DS Biobank Oversight Committee policies
  • Development of research determination guidelines
  • Establish Utilization Committee
  • Community education & awareness

PHASE 3

  • Wide scale collection of samples
  • Onboard additional U.S. clinical collection sites as funding permits
  • Consolidation of smaller, regional sample collections
  • Acceptance of applications from researchers

DS BIOBANK OVERSIGHT COMMITTEE

The DownSyndrome Achieves DS Biobank is governed by a DS Biobank Oversight Committee comprised of researchers and advocates for people with Down syndrome. The DS Biobank Oversight Committee reviews and approves research projects that meet rigorous scientific and ethical guidelines.

Members of the Governing Board include:

  • Rachel Adams, PhD,
    Professor of English and Comparative Literature, Columbia University
  • Alberto Costa, MD, PhD,
    Director, Intellectual Disabilities Program, Case Western Reserve University
  • Daniel Coury, MD,
    Chief, Developmental and Behavioral Pediatrics, Nationwide Children’s Hospital
  • Lotta Granholm-Bentley, DDS, PhD,
    Director, Center on AgingMedical, University of South Carolina
  • Benjamin Handen, PhD,
    Professor, Psychiatry, Pediatrics, and Psychology, University of Pittsburgh
  • Jisun Lee,
    Down Syndrome Diagnosis Network Advisory Board Member
  • Cynthia Lemere, MS, PhD,
    Associate Professor, Neurology, Harvard Medical School
  • Sandra Savage,
    Marketing Communications Director, DownSyndrome Achieves
  • Brian Skotko, MD, MPP,
    Co-Director, Down Syndrome program, MassGeneral Hospital for Children
  • Bjoern Sperling, MD,
    Senior director and global therapeutic area lead, Multiple Sclerosis, Biogen
  • Nicole White,
    Shared Resource Administrator, Cincinnati Children’s Hospital

SCIENTIFIC ADVISORY PANEL

The DS Biobank Scientific Advisory Panel provides guidance on issues related to biobank operations and potential DS research initiatives.

Members of the Scientific Advisory Panel include:

  • Mark Bradford,
    President, Jerome LeJeune Foundation USA
  • Dean Hartley, PhD,
    Director, Science Initiatives, Alzheimer’s Association
  • Elizabeth Head, MA, PhD,
    Associate Professor, Sanders-Brown Center on Aging University of Kentucky
  • Huntington Potter, PhD,
    Director, Alzheimer’s Research, Linda Crnic Institute for Down Syndrome
  • Nilsa Ramirez, MD, FACP,
    Medical Director, Biopathology, Center Nationwide Children’s Hospital
  • Stephanie Sherman, PhD,
    Professor, Human Genetics, Emory University School of Medicine
  • Maria Stanley, MD,
    Clinical Associate Professor of Pediatrics, University of Wisconsin School of Medicine and Public Health

ABOUT

DownSyndrome Achieves is a unique research advocacy group that focuses exclusively on accelerating research through improvements in research infrastructure. We are creating critical tools necessary for researchers committed to making life healthier for people with Down syndrome.

BOARD OF DIRECTORS

  • Cara Cloyd,
    Cara Cloyd is Exclusive Black Level Presenter for Younique Cosmetics & Skincare.
  • Elizebeth Maag,
    Elizebeth Maag is general counsel for CrossChx, a universal patient profile healthcare data company.
  • Dan Overmyer,
    Dan Overmyer is principal of Overmyer Hall Associates, a commercial, personal property & casualty insurance agency located in Columbus, OH. He is also father to Charlie, his young son who has Down syndrome.
  • Mark Weitzel,
    Mark Weitzel is a Vice President of Commercial Lending at JP Morgan Chase Bank.

STAFF

CONTACT US

We look forward to hearing from you.

Headquarters

PO Box 1596
Dublin, OH 43017
Phone: 614.362.3441
Email: info@dsachieves.org