Information about OT Research and how to donate towards OT Research.

Moderator: gloria

#1402
Donate now to support research for the cause, treatment and cure of Orthostatic Tremor.

Through the dedicated work of members of the OT forum/community, a nonprofit fund for the purpose of research into Orthostatic Tremor has been established through the National Organization of Rare Disorders (NORD)**. The NORD Research Grant Program provides seed-money grants to academic scientists for clinical research. The hope is that these studies will ultimately lead to new diagnostics or treatments for Orthostatic Tremor.

All donations are tax deductible to the fullest extent of the law and you will receive a receipt from NORD. Every gift brings all of us closer to our goal. All donations go directly to NORD, all decisions about the recipients of the grants are under the control of their "Research Grant Policy":
NORD's grant review process is based on the same peer review system utilized by the National Institutes of Health (NIH). Scoring of grants is done individually by each medical expert, and scores are added together to determine the final ranking of each proposal. Any reviewer with a conflict of interest is excused from voting on a specific proposal. It is not possible for donors to signify how they want their donations spent (e.g., on a genetic test rather than development of a treatment), or which researcher should be funded. The grant selection process is unbiased and independent; awards are based solely on scientific merit. Only the best research projects will be funded.link for more information.


The Orthostatic Tremor website and the work provided by members to establish meetings etc, are donated and not part of these research funds. As a result your donations go directly to the NORD OT Research Fund.

3 CONVENIENT WAYS TO DONATE *

1. For US and non-US donations - DONATE ON THE NORD WEBSITE, using your credit card by following these steps:

1. Visit the following website: LINK to NORD
2. Enter the amount of your donation
3. VERY IMPORTANT - click on the "RESEARCH FUND" button and choose "PRIMARY ORTHOSTATIC TREMOR" from the drop-down menu.


2. For US and non-US donations - DONATE BY PHONE
To make a credit card donation over the phone, please call 203-744-0100.
- Please mention that the donation is for the Primary Orthostatic Tremor Fund.

3. SEND YOUR DONATION BY MAIL. (US citizens only) Make your check payable to NORD/PRIMARY ORTHOSTATIC TREMOR Restricted Research Fund and mail to the following address. If you are sending a donation via mail from outside of the US please confirm with NORD that they can accept your check/checque, in some chases it would be best to use the link above and donate online.

ATTN: Cecilia Hall
NORD 55 Kenosia Avenue
Danbury, CT 06810
USA

If your employer offers matching gifts, please send the paperwork to NORD for an additional gift to OT!

All together we can stand up to OT.

**The National Organization for Rare Disorders (NORD), a 501(c)3 organization, a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
http://www.rarediseases.org

The concept of an OT fund was first discussed at the Rochester '08 OT meeting and a special thanks to Pat and everyone involved for their work contacting NORD, gathering and assembling this information.
By gloria
#1403
To all OT friends :
We have reached a point in time when we all realize the need to move forward to a much needed level of finding help to fight the frustration of our disabled lives. It is our chance to bring new hope into our future. Our thanks to Pat for putting the program together and Jeff's expertise of presentation. It is up to us to keep this fund going to achieve our goals.
To be continued together, Gloria
By Lake of the Woods
#1404
Many thanks to Pat who spent a lot of time I am sure putting all the papers together to get this started. Also, many thanks to Jeff who does such a professional job putting all the information on the website. We are all lucky to have these two people helping us. Hopefully, everyone who is struggling with OT will now support this endeavour!

Peggy Whitta
By Betty
#1429
Good morning everyone!

I do hope all who can will donate to our cause! It can be whatever you feel you can afford. I know times are tight now, but just a few dollars from each of us can make a difference. The time is NOW!

Pat Whitney was the "spearhead" behind this venture; and Pat, we all thank you for all your hard work getting everything together. I'm sure it took lots of time; but for such a worthy cause ~ now it is up to us to gather the funds needed.

Also, thanks to Jeff for all the work he does to keep the website up to date. What would we do without all those who continue to step up and do what they can?

Please try to help; it is important to all of us.

Betty 8)
By Helen TO
#1432
Hi Everybody,
It is ages since I have been into the website and was thrilled to see that the funding process is moving along. Thank you Pat for all the work that you have done.
I called the office of The National Organisation for Rare diseases and they accepted my donation using my credit card. It was very simple so do not hesitate.
I do hope that all the people on line will respond generously because now it is sort of up to us ....we are the people with the motivation to find a cure. If we manage to have a get-together in 2009 we could maybe brainstorm some online activities for raising funds ... Jeff, can we organise on line auctions?! (Gloria, you and I have a couple of handsome cats that might generate a penny or two under the auctioneers hammer!!)
Good wishes to everyone for an enjoyable holiday and a healthy 2009.
Helen,
Toronto
By magnbud
#1557
This is wonderful news ,and is a big step toward someday finding real help for this unusual and misunderstood condition we have! Maggie in Tulsa
By Len L
#1570
I am delighted to see that some real research is being carried out to find a cure for POT. My neurologist in London informs me that the cause is unknown and that no known cures are available. I take clonazepam which gives little or mild relief and I am excited to see that properly organised research is to be carried out, as I am sure all fellow sufferers will be too!

My support is not only in words but I shall be sending a suitable donation and wish every success to those who are researching on our behalf.

Len L
By zivia
#1574
Hi everyone,
Just think about this. There were almost 400 OT members at last count. If each one of us donated $100 there would be more than enough money to get the research started. I think this would be money very well spent. I sent my share in as soon as I saw the posting last year. Please join me and let's do something about this horribly debilitating condition.
Rita
By Lake of the Woods
#1577
The following is a letter that was recently sent out to everyone who has contacted the website

Hello,
Your visit to the Orthostatic Tremor website indicates an interest and we would like to let you know what a small group of us are doing about OT.

A year ago, 10 of us who have OT met in Rochester, MN to talk about common problems and meet with a neurologist from the Mayo Clinic. We came from Florida, Canada, Alaska, New Jersey and as far away as Spain and we all agreed that research on OT is of primary concern to us.

At that meeting we decided to create our own fundraising effort for OT with the help of NORD --the National Organization of Rare Disorders. NORD is a well established and respected 501(c)(3) charity that provides a way for groups of people like us raise money under their nonprofit umbrella.

Our goal is to raise $35,000 for research into the causes of OT and an eventual cure. Once we have raised the money, NORD's Medical Advisory Board will send out "requests for proposals" to the researchers. NORD will evaluate the proposals, award the money and follow the work, reporting back to us. NORD handles all of the administration, government reporting, publicity and record keeping, charging $3,500 or about 10% of the $35,000. This has worked very well for many other small groups who are dealing with rare disorders like OT.

Now, here's where you can be involved...

We're asking you to join with us in supporting the OT Research Fund at NORD. Your gift will bring all of us that much closer to our goal and that much closer to unlocking the causes of OT and finding a cure.

Gifts may be made from anywhere in the world. For instructions on three easy ways to donate look at the upper right corner of the home page heading on the OT website and click on "Donate - OT Research".

If you donate on the NORD web site, please enter “OT Research Fund” in the “in honor of” box.

NORD website - http://www.rarediseases.org/helping/donate

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

Thank you,

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

PS -- If you would prefer not to receive emails about fundraising and OT research in the future, please reply and simply state "OT-- no email" in the subject line of the email.
By Lake of the Woods
#1578
Hello everyone,
I thought I would let you know about my idea for fundraising for our research. Most of us are the only one in their city who has this but this idea can possibly be carried out by others as well and it can be small or large, whatever you are comfortable with.

I am going to host a dinner/barbecue at our home later in the summer. Two months prior I am going to mail out a letter to all my family, friends and acquaintances ie. doctor, dentist etc. and to everyone I know that I think would help. I will tell them that the dinner will be a "fundraising" and explain a bit about OT and then explain how we have just established our own registered charity with the help of NORD.

I am asking them to let me know by the end of the month if they can come so I can plan accordingly. This will give me one month to plan. When they come to the dinner they can make a donation to NORD at that time. Also what I did, since I have decided to send it to friends and family out of town who will probably be unable to come but I feel would help is this. My sisters and I made a beautiful quilt this past winter and everyone who donates will have their name entered in a draw for this. I wanted to show appreciation to everyone who is donating, especially the ones who will be unable to attend.

I have told my family and friends and they all thought it was an excellent idea and are very willing to help - which I will need of course.

I know that if I had a friend that had some kind of difficult problem and decided to do something like this I would be one of the first ones there and when I thought about this I decided to go ahead. I hope others will consider this idea also.

Peggy
By valena
#1622
Great news about the research fund. I will join in on this by phone.
It is encouraging to read about this endeavor.
God bless all of you and may there be help discovered for all of us.
Where in the world is OT?

Hi Theresaann. I know exactly how you feel. I've h[…]

I began taking Fycompa 1 mg. on Oct 22, 2018. I cu[…]

Medication

Hello and Welcome. Have you had the chance to read[…]

Sue T

I am new to the forum, having been diagnosed this […]

2017 Omaha OT Meeting and Research