At the beginning of June, I attended a conference of researchers seeking treatments for conditions associated with Down syndrome. This month, a survey is seeking your input on what you think about treatments for Down syndrome.
The Second T21RS Conference was held in Chicago, Illinois in June. From the organization’s website:
Trisomy 21 Research Society (T21RS) is the first non-profit scientific organization of researchers studying Down syndrome, founded to promote basic and translational research on Down syndrome and to apply new scientific knowledge to develop improved treatments and cures.
The conference brought together dozens of researchers from around the world. They shared their research, what challenges they were facing, and were able to network and connect with others focused on developing treatments for conditions associated with Down syndrome.
Dr. Diana Bianchi, Director, National Institute of Child Health and Human Development, at the T21RS conference
I was invited to be a member on a panel of parents of children with Down syndrome to share our views on research and treatment. The description for the panel was for a debate of pro vs. con positions on research and treatment. I was introduced as “ambivalent” on research and treatment, since my support or critique depends on the type of research and treatment being discussed.
Launched this month is a survey seeking views from the Down syndrome community on research and treatments that may alter Down syndrome. From the on-line survey:
Researchers from Mayo Clinic are interested in speaking to the Down syndrome community about potential medical treatments that might alter the symptoms of Down syndrome. This is a pilot study for a larger project in which we plan to survey both self-advocates and care partners about the acceptability of potential treatments for genetic conditions. We hope to learn about this topic by comparing viewpoints from people with different conditions and their families.
Overall, I find both of these newsworthy items encouraging.
It is encouraging that there are teams of people devoted to seeking treatments for conditions associated with Down syndrome. Despite some of my concerns and critiques, unless shown otherwise, I take it as a given that these teams have both the best of intentions and hopes for helping individuals with Down syndrome and their loved ones.
Dr. Brian Skotko at the T21RS conference
Equally, I find it encouraging that some researchers are thoughtful enough to seek the input of those from the Down syndrome community about what they think about research and treatments. Too often decisions affecting those with Down syndrome are made without input from the Down syndrome community–earning the critique of “not about us, without us.” The GIFTED survey is a positive step towards addressing that critique and allowing the views of those affected by these potential treatments to be heard, and possibly inform the research, development, and administration of future treatments.
You can access the GIFTED survey at this link and provide your thoughts on research. I hope you will do so.
Seems the survey is closed.
You are correct–the survey was a pilot one which will lead to a larger research investigation. I’ll update this post as those steps come along.