Moderator: gloria

By admin
What a great story! a website started a little more than 10 years ago by Gloria to build a community to spread the word about this rare disorder and support people with OT. This community has grown over the years and in 2008 a handful of courageous people traveled to Rochester Minnesota for the very first OT meeting.

At this meeting in Rochester the idea of building a fund for research was launched. With careful consideration NORD was chosen to be the facilitator of the grant process. NORD has a terrific organization and made the process seamless. In 3 years with the generous support of the OT forum members and friends the goal was reached to start the process.

Everyone here should be very proud of being part of this process!

Whether anything will develop from these projects is unknown, but something is being done and that is a step forward. We may learn what OT isn’t and there is success in that result too. OT will be the focus of 2 concurrent research projects because of your help, and for this we are all thankful.
By Sueb
Great news that one of the two research grants is for Dr Julian Rodrigues, who is here in my home town of Perth, Western Australia. My neurologist has already referred me to him to be part of his research, so this is very exciting.
I am also very pleased about the other research group in Paris, as two of my very dear young French neurologist friends work there, I think!! I will check with them.
By admin
a note from the NORD website about the concept and purpose behind the research grants:
NORD's Research Grant Program provides seed money in small grants to academic scientists studying new treatments or diagnostics for rare diseases. The clinical researchers supported by NORD's research grants provide preliminary data indicating that a treatment (drug, device, or medical food) may be safe and effective when used for a larger number of patients. Researchers can then use the preliminary data to apply for larger multi-year government grants or to attract a commercial sponsor who will manufacture an orphan product and get it approved for marketing by the U.S. Food & Drug Administration (FDA).
link to NORD research information
By Betty

I just wanted to thank everyone who has...and continues to donate to NORD. This is so important we continue to fund this program, and hope one day an answer will be found for all of us who have OT.

We can never thank Jeff and Gloria enough for this site; it has been a God send to all who have found it.

Thank you!

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