We had the opportunity to speak with Lito Ramirez, founder of Down Syndrome Achieves. DSA’s mission includes Research and Funding, Political Advocacy and Education. They have a new initiative called ONE21. ONE21 seeks to fund the development of a dedicated and centralized DS biobank that will be open to all DS researchers, regardless of institutional affiliation.
A biobank is a large medical-grade refrigeration unit used to store high-quality samples of blood, tissue, DNA and other specimens researchers need to build a more thorough understanding of DS. It is a critical tool in advancing research in speech and communications, congenital heart defects, childhood leukemia, early cognitive decline, thyroid issues and others.
Without a biobank, progress for our loved ones with DS will remain slow.
Biobanks have been in use since the late 1990′s, and are already commonplace in other research areas, including autism, cystic fibrosis, Duchenne muscular dystrophy and psoriasis.
A biobank will go a long way toward advancing the science of DS faster, making therapies and best practices available sooner, so our loved ones with DS can live healthier, happier and more vibrant lives.
Lito is the father of a child with DS just like us. We had a great time learning about DS Achieves, ONE21 and what a biobank is. Now go to www.ONE21.org and click sign me up!
Thanks,
Mark
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