LuMind RDS Responds to Incomplete Picture Portrayed in CBS News Iceland Documentary and Raises Awareness of Ongoing Down Syndrome Research

Categories: Blog, Other

Official Statement


Marly Chevrette, Communications Manager
603-828-8857 | mchevrette@lumindrds.org

 

Marlborough, MA – August 18, 2017 – LuMind™ Research Down Syndrome Foundation (LuMind RDS) joins other Down syndrome organizations in responding to the incomplete picture of the life and opportunities of people with Down syndrome portrayed in the CBS News documentary that was streamed on August 14th. While we believe that eradicating ailments like Alzheimer’s, cancer, diabetes and other lethal diseases constitutes a worthy objective, we do not believe that it is appropriate to “eradicate” Down syndrome. At LuMind RDS, we fund scientific research to meaningfully improve memory, cognition and independence in individuals with Down syndrome.

The documentary provides new and expectant parents and the general public an incomplete and negatively biased picture of life with Down syndrome. With advances in heart surgery and inclusive care, the average life expectancy of a person with Down syndrome has more than doubled. For children who benefited from early intervention, the average capabilities are higher than they have ever been, and people with Down syndrome are more significantly involved in their communities. These major advances have already taken place in inclusive societies and quality of life is much better than what is being reported by some of the media and medical professionals.

In addition, the documentary did not mention the important advances in research for Down syndrome that have happened over the last decade:

  • Several completed or ongoing large research projects (including genomic sequencing/phenotyping studies, biobank analysis, epigenetic studies, work on stem cells, Alzheimer biomarker studies, and more) have led to major leaps in understanding Down syndrome;
  • Multiple therapeutic clinical trials have been and are being conducted;
  • Researchers have developed in recent years a deeper understanding of gene function and many gene therapy treatments and delivery tools that can now, with focused research efforts, be applied to Down syndrome;
  • Promising research is being conducted to better understand the differences in learning and sleep for people living with Down syndrome, with new findings that may lead to additional treatments or therapeutics;
  • The pharmaceutical industry is making progress in testing promising late-stage therapeutic molecules to prevent the onset of Alzheimer’s disease, which people with Down syndrome are prone to develop two to three decades earlier than the general population.

We invite all families to learn more about Down syndrome and to inform themselves about the ongoing cutting-edge research. To learn more about the research supported by LuMind RDS visit LuMindRDS.org/research, to support funding for more research visit events.LuMindRDS.org/donate.

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About LuMind Research Down Syndrome Foundation

LuMind RDS is a non-profit foundation founded in 2004 that has already provided about $17M in funding towards Down syndrome research. We solely focus on the discovery and development of new treatments for children and adults with Down syndrome, to allow them to live more independent lives, improve their cognitive abilities and prevent the onset of Alzheimer’s. LuMind RDS is a science-focused organization and does not have any ideological affiliations.