research

[Guest guest]

Thought this was interesting.

Sally

Mother to DS 13

Parents,

Here is an opportunity to impactcutting edge research!IntroMy name is Edie

, and I am conducting a survey for Dr. Mobley,Founder and Director of The

Center for Research and Treatment of DownSyndrome at Stanford University, to

learn what therapies and supplementsare working to overcome the challenges

presented by Down syndrome. Thequestion is simple - " What is working? " We will

be looking for clustersof similar initiatives resulting in similar outcomes. If

those clustersdo form, then further analysis will be done. If we see trends

whichcould be helpful, we will also make a report available to parents.

RequestWe need your HELP please. We need to compile a list of every

singletherapy and supplement parents have used. Please email me what you

havedone or are doing with your child in terms of therapies,

treatments,supplements, you name it - we want to know about it. I owe Dr.

Mobleythis information by April 14th, so I would appreciate your input byApril

9th.

Even if you cannot remember everything, that is OK - pleasejust email me that

which you do remember.Next StepsThe next steps will be as follows: 1) Design

initial survey instrument,2) Test the survey via phone interviews on 5

individuals then 10 then50, 3) After 50 surveys are completed the final survey

instrument willbe written, 4) Conduct 2,000+ surveys. The final survey may or

may notbe phone based. We will also explore an Internet based

informationgathering system as well. If you would be willing to be a guinea

pigfor a phone survey, please indicate so in your email and provide me yourphone

number. Your input and time would be very helpful andappreciated!Background -

FYII proposed to Dr. Mobley in August at the NDSC convention acomplementary

therapy research project. The research I proposed was toobroad. He, instead,

came up with the idea to simply survey parents tolearn what is working.

Pharmaceutical companies go through a similarprocess when researching chemical

compounds to find breakthroughproducts.

Surveying patient groups, however, breaks new ground in theresearch world.

Usually scientists do not communicate with the " end-user " . (Isn't that amazing? I

did not realize this until visitingwith him. From my non-researcher's

perspective, it appears thescientists have made a tremendous error in oversight

to ignore such arich 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

trailblazingparents. Let's be heard!!

Thanks,

Edie edie.howard@...

Please feel free to call if you have any questions.P/F: >