Statement by DownSyndrome Achieves CEO, Lito Ramirez, on the Launch of DSA Biobank Operations at Lee Specialty Clinic

In December 2015, DownSyndrome Achieves launched an effort to develop a centralized and dedicated biobank for Down syndrome research that would serve as an open resource seeking to conduct studies that improve the health and well-being of individuals with Down syndrome and others.

That’s why I’m so pleased to announce the DSA Biobank is now live and operational, and actively collecting blood samples from individuals with Down syndrome and immediate family.

This has been a long journey, with more than its share of challenges, struggles, and failure. However, it is only because of the help and and support of so many people that we have reached this important milestone.

We are grateful to our partners: Lee Specialty Clinic in Louisville, KY, for being our first collection site, and Cincinnati Children’s Hospital Medical Center for managing DSA Biobank operations(additional collection sites, including the DS clinics at Nationwide Children’s Hospital and Cincinnati Children’s Hospital Medical Center, will start later this year).

With the DSA Biobank, researchers now have a powerful resource to increase our scientific understanding of DS, and facilitate the discovery of new therapeutics and diagnostics that will ultimately improve the health and well-being of people with Down syndrome and others.

In fact, we have already approved the first research initiative to receive samples from the DSA Biobank. Initial samples collected will be shared with Dr. Dimitrios Karamichos, PhD, an Associate Professor of Ophthalmology & Cell Biology at the University of Oklahoma. Dr. Karamichos is studying Keratoconus Dystrophy, a progressive and degenerative disease of the cornea that afflicts as many as 60% of the Down syndrome population (Note: the DSA Biobank does not support, under any circumstance, research that seeks to inhibit or prevent the conception or birth of people with Down syndrome).

Our heartfelt gratitude and thanks to everyone who believed.

WHAT YOU SHOULD KNOW ABOUT THE DSA BIOBANK

• The DSA Biobank is open to any researcher seeking to improve the health and well-being of individuals with Down syndrome, and conducting studies that deepen our understanding of DS and related health conditions.
  
• The DSA Biobank does not support, under any circumstance, research that seeks to inhibit or prevent the conception or birth of people with Down syndrome.
  
• The DSA Biobank has started collecting initial samples at Lee Speciality Clinic in Louisville, KY. Other collection sites, including the DS clinics at Cincinnati Children’s Hospital Medical Center and Nationwide Children’s Hospital, among others, will open later this year.
  
• The first samples collected by the DSA Biobank are being shared with a researcher at the University of Oklahoma studying Keratoconus Dystrophy, a progressive and degenerative disease of the cornea that afflicts as many as 60% of the DS population.