Yesterday I received a phone call from a mom on a mission. She wants to gather information about alternative therapies which are used in the DS community. Here is her subsequent email to the ES email list:
Attention All Trailblazing Parents: Here is an opportunity to impact
cutting edge research!
My name is Edie Howard, and I am conducting a survey for Dr. Mobley,
Founder and Director of The Center for Research and Treatment of Down
Syndrome at Stanford University, to learn what therapies and supplements
are working to overcome the challenges presented by Down syndrome. The
question is simple – “What is working?” We will be looking for clusters
of similar initiatives resulting in similar outcomes. If those clusters
do form, then further analysis will be done. If we see trends which
could be helpful, we will also make a report available to parents.
We need your HELP please. We need to compile a list of every single
therapy and supplement parents have used. Please email me what you have
done or are doing with your child in terms of therapies, treatments,
supplements, you name it – we want to know about it. I owe Dr. Mobley
this information by April 14th, so I would appreciate your input by
April 9th. Even if you cannot remember everything, that is OK – please
just email me that which you do remember.
The next steps will be as follows: 1) Design initial survey instrument,
2) Test the survey via phone interviews on 5 individuals then 10 then
50, 3) After 50 surveys are completed the final survey instrument will
be written, 4) Conduct 2,000+ surveys. The final survey may or may not
be phone based. We will also explore an Internet based information
gathering system as well. If you would be willing to be a guinea pig
for a phone survey, please indicate so in your email and provide me your
phone number. Your input and time would be very helpful and
Background – FYI
I proposed to Dr. Mobley in August at the NDSC convention a
complementary therapy research project. The research I proposed was too
broad. He, instead, came up with the idea to simply survey parents to
learn what is working. Pharmaceutical companies go through a similar
process when researching chemical compounds to find breakthrough
products. Surveying patient groups, however, breaks new ground in the
research world. Usually scientists do not communicate with the
“end-user”. (Isn’t that amazing? I did not realize this until visiting
with him. From my non-researcher’s perspective, it appears the
scientists have made a tremendous error in oversight to ignore such a
rich source of leads.)
I sure hope you will take a few minutes to email me your input. I
cannot compile this list without the help of hundreds of trailblazing
parents. Let’s be heard!!
As we talked, Edie spoke about the children with DS who enter school at appropriate age with no cognitive delays. They aren’t common, but they are out there. No one has ever done the research to learn what those parents did differently, if anything, in order to find out what is working.
No, I need to rewrite that… No prestigious scientist has published research about what those parents did differently. I would say that the neurodevelopmentalists at NACD and ICAN have plenty of research that they hold within their groups, and they have data from hundreds of families about what is working. There are probably other therapists and educators who have gathered data. But no one with research clout has gathered it and processed it in a statistically significant manner.
That is where you can help. The comments on this post are a place to list the therapies which you use that you believe are successful. It will help Edie if you give a brief description of that therapy, or a link to more information about it.
If you are on a DS email list, it would be helpful if you would send a post to the list with a link to this post, and ask people to comment about which therapies should be included in the survey.
I think Edie is on to something.