The Orthostatic Tremor Forum (archive)

Dear Friend—

We have some great news! OT Research could begin this year!

A year ago we emailed all who had accessed the OT website, asking you to help us start a fund for OT research. In that time, we have raised according to NORD’S March 31,2010 report $23,495.00. Thank you to all who have supported this effort!

We are writing to ask you to join with us again to contribute to the OT Fund in the hopes that together we can reach our goal of $35,000 or more in 2010.

Just think, a team of neurologists could begin unlocking the mystery of OT as early as this year!

The OT Fund is managed by the National Organization of Rare Disorders (NORD) in CT where research will begin when we have raised $35,000.

NORD is a well-respected umbrella agency that has helped many people who have orphan disorders, like us, to organize research funding and match that funding with an appropriate research cohort. All donations are made directly to NORD and we report quarterly on the OT Forum on the fund’s progress.

The ten of us who have donated and signed below came together (from all over the USA, Canada and even Spain) in Rochester, MN, in 2008 to meet with Dr. Matsumoto from the Mayo Clinic to begin this effort!

It’s exciting to look at what we’ve accomplished in two years. But the real excitement will be when the research begins!

Please give as generously as you can to the OT Research Fund at the Orthostatic Tremor website http://www.orthostatictremor.org/ Just click on Donate OT Research at the top of the Homepage and it will take you directly to “how to donate” (three convenient ways).

Please send your gift today. Together we can STAND UP to OT!

Thank you,

Pat, Peggy, Gloria, Helen, Betty, Myrna, Lori, Patty, Mike and Stella

PS : Also, please visit the the Forum to read about our OT Get-Together in 2010!
Currently this is scheduled for October in Atlantic City NJ. The plans are starting to come together, so please join the discussion on the forum to hear the latest details of the 2010 OT meeting.

Reminder about the get-together we are planning in Atlantic City in October. Pls let us know by June 30th if you can attend.

Thks.
Peggy

Hello,
a donation to the fund will be made shortly.
It will be very interesting if the active OT-people in this forum can be of help or assistance in any way in the upcoming research. I would very much like to help in any way I can!

best regards
Golfnut

check out the latest news and progress about the fund at the following OT RESEARCH updates

Also, NORD has updated their research specific donation page and included "Primary Orthostatic Tremor" as one of the funds on the drop-down menu of this page.

LINK to NORD

Click on the "RESEARCH FUND" button and choose "PRIMARY ORTHOSTATIC TREMOR" from the drop-down menu

there's more information on the following discussion on how to donate LINK

and updated fund totals here LINK

Hi Everyone,

We're getting so close. I just made my donation. It's so easy to do. Just go to "link to Nord" and give whatever you can. Let's get the research going in our lifetime!!!!!

Rita

Dear new friends
I was just diagnosed with OT in May, 2011, at Mayo Clinic. I'm also trying to get familiar with the website and how to get the most out of it. I was pleased to see that we are close to the goal of $35,000. I will be making a donation soon.
Thanks so much for you veterans and all of your efforts. I'd be very intereseted to hear if another gathering is being organized.
Lanita

Myself and a friend just donated a sizeable amount of money that should bring you very close to the $35,000.

Dear Lanita:
Thank you and your friend for your donation to our OT research fund. I’m so excited as most of us are, that this fund is near reaching it’s goal which will result in the first research program through NORD generated by those of us suffering from the disabling OT in our lives. You should be getting an official letter from NORD’s receipt of your donations. In answer to your question another meeting will probably be forthcoming within the year. That will be a incredible experience for you to meet with other OT people. Thank you again for your proactive help in fighting OT , Gloria