Shades of "Flowers for Algernon"

I attended a conference today whose focus was on the research that is being done on Down syndrome in the area of cognition, memory and speech. It was very exciting to hear what the genome project has done to enthuse research into some of the problems that confront people with DS. There is a wonderful foundation that is taking on the enormous task to, first, research what specifically causes these problems and then to pioneer ways to help improve these areas for children and adults with DS. The foundation responsible for all the excitement is DSRTF. The research is both exciting and hopeful and all morning as I listened to the various doctors speak (one of the leading researchers is from Stanford) was to think about the book "Flowers for Algernon". With all the genome discoveries, these researchers have been able to identify specific genes responsible for aspects of DS and then to replicate them in mice. They are then able through cognitive testing (still not quite sure how you measure cognitive ability on a mouse) are finding treatments that allow those mice with DS-like genes to operate at nearly the same level as "normal" mice. They have found that children with DS have an over abundance of inhibitory responses happening in the synapses of the brain (sort of trying to reach a cruising speed while having your foot on the brake) and that once the inhibitory response is blocked, the DS-like mice act just the same as the "normal" mice. One researcher who studies mouse behavior has been able to record high frequency "talk" among mice. The DSRTF researchers hope to see if there is a change in these "communications" among the DS-like mice and if so they feel they can find the gene that causes the problem and then search for a "cure". What is very exciting about all this is that they feel they are 3-5 years away from having enough research to start looking into getting pharmaceutical trials going. Another great benefit is that since it is the 21 chromosome that is duplicated in DS and this same chromosome carries the gene for Alzheimer's, all of this research has the double benefit of helping those suffering from AD or possibly in the future to do away with Alzheimer's completely.

I must admit that I have mixed feelings about all this. In essence if all this comes to fruition, by taking a pill every day, a person with DS could increase their cognition and memory. However, if that medication were stopped, they would return to their former self (hence the "Flowers for Algernon"). Part of what makes Jadon who he is, is just that piece that would become "normal". His childlike outlook on life, his compassion, his caring. Children with DS see the world differently and because they do, it has changed the way I look at a lot things. If that were lost, the essence of Jadon might be lost. On the other hand, an increase of only 10-15% in cognitive ability is that is needed to go from a state of dependence to independence. So therein the quandry lies. I guess I've had too many parents lately that bring their children into the therapy center looking for someone or something to "fix" their child. I've never viewed Jadon as being "broken" and in need of "fixing", which right now no one could do anyways, but rather Jadon is just Jadon and having an extra chromosome is just part of who he is.

Luckily those decisions don't have to be made yet and there is still time to study this out. I would encourage anyone that is looking for a worthwhile venture to donate or become involved with to consider the DSRTF. Eight six cents of every dollar donated goes straight to research and many of those involved have children with DS themselves.