The Orthostatic Tremor Forum (archive)

I have just been notified by NORD that we have reached our goal for them to start the process of looking for a medical institution to do research on our behalf.

Congratulations and thank you to everyone who donated and made this possible. It has taken us less than 3 years to reach this goal and that in itself is quite an achievement.

NORD has given me the answers to some questions I had asked and I will do my best to let you know as much as I know. They also provided me with the following link:

http://rarediseases.org/medical-profess ... rants/rfps

If you click on any of the links for Requests for Proposals (RFP) you will get an idea of how they are presented.

They have also advised that there is a strong possibility that our RFP will be sent out this fall. They said they just have to wait until another group has reached their goal and they said that is likely to happen. We will be advised when our RFP is sent out and I will advise you.

NORD also advised that no money will be disbursed until forms they require are received. Then they only disperse a portion of the funds to provide start-up. There is also a 6 month interim progress report required along with a financial report that has to be approved by NORD’s board of directors that is mostly made up of doctors. Note also that she advised that these doctors do not receive any renumeration for their time so we are fortunate to have them.

I also asked if once the proposal was set up ready to be sent out if we were able to add to that total in case we received more donations and they said “no”, we would put that money into a new funding project but that is fine because hopefully we all realize that this need to keep supporting is important.

I asked if we could find out the names of other medical institutions who were interested, once they award the money but they advised that we would not be privy to that information.

I plan to get a total of our fund at the end of each month from now on until the RFP is sent out and will post this info on the forum.

I also asked what will be the procedure will be if the institution that gets the grant needs human subjects. NORD advises that they work very closely with the hospital’s Institutional Review Board to ensure everything is done properly.

"Institutional Review Board committee. ("IRB Committee"). The IRB committee serves as a hospital's bioethics committee for research studies, insuring that the studies appears safe, realistic, scientific, and that the proper consent forms are in place.


There are a couple of points that I will be contacting NORD about and that is to say that we are aware of the lack of success that has resulted from DBS surgeries that have taken place and we would not support this at this time. Also, we would want to let them know that we would like to see a comprehensive study done of all OT people willing to take part in. We feel this would greatly benefit any research taking place now or in the future.

Lastly, please continue to make your hopefully annual donation. We all should know that this process of donating will have to continue for future studies. I just wrote a letter to a celebrity to see if they would match our amount. I said that “we did not sit back and wait for others to help”. We raised this total on our own and would they consider helping. If we ALL wrote a letter to a celebrity, maybe we might get lucky. Please think about this idea.

Peggy

Hi Peggy,

I just wrote a post; hit some key and everything disappeared....so I will try again!

As I read this, I got chills and it brought tears to my eyes. It is amazing to me what can be done by a few people when we have a purpose and a goal; we have both.

I know how much effort and time you have spent on this; and what a great fund raiser you had to get us close to our goal. I know Helen also had her fund raiser, which probably helped put us almost over the top.

Each person who has found this site and contributed helped us reach our goal; but we must continue to do our part; and continue to donate. As I have said so many times before; I know times are tough right now; but give whatever you can. Every little bit helps.

I also must mention our very good friend Pat Whitney who help spearhead this venture. I know there are many others of whom I am unaware; and to those I commend you as well.

We are on our way!!!! Perhaps the doctors will be able to find just what causes OT and what can be done to help us.

We should be very happy with what we have accomplished ~ I am!

Betty

This is fantastic news!!! Thank you to everyone who has worked so hard and made donations to make this possible. The next couple of years will be very exciting. This is such great news!!

Kate

WE HAVE REACHED OUR GOAL!! How wonderful that sounds! It is a dream come true, something I did not believe would come about in my lifetime. Our thanks to Peggy, Pat and Helen who forged ahead our funding to a remarkable success. It is a new beginning in our fight against OT. They started the momentum of funding , we must continue our contributions to our fund so we have the means to fight off this disabling disorder that has changed our lives. We also need more people who are willing to help, perhaps you have ideas about fundraising or means to outreach our cause.

As Pat said in our last annual letter “Together we can stand up to OT” a very clever call ! Thanks to everyone! Gloria

What a glorious announcement. We all have been waiting for this good news. Many thanks to all of you that worked so hard with fund raising etc., without your diligence we may have not made the mark for research. I know I will continue to give to NORD to help get the research moving. Perhaps now we will get some serious answers and not blank looks from our doctors. I truly have tears in my eyes thinking about how wonderful this group is and what they (we) have accomplished. Gloria, you started this site and I am so grateful for you.

Hi Peggy

I was just wondering if the researchers will research OT and/or OT plus?
I am so happy about the news and thankful to all that have donated and taken the time to invest.

What wonderful news to wake up to.
Thanks to Peggy and all the major fund raisers for their inspiration in keeping us all motivated to continue donating to NORD ,This continues to be a superb site thanks to Gloria
We want our lives back on track ,( small donation add up so quickly) lets carry on the good work
MaureenB

That really is great news, we sufferers with OT Plus may be the clue to the problem of a cure. I am so happy about this news and a big thanks to everyone that contributed.

Something else people should be aware of is the fact that it is important to make sure your location is listed in the appropriate spot on the website. Once the location of the research is announced, then the logical thing would be for us (remember we are just volunteers here doing our best) to search for people who live closest to this location through the website, and make sure they are aware of what is happening if human subjects are needed in case they want to be involved. I would suspect there is a strong possibility that we will be asked for volunteers and OT people will be involved.

Of course, the location and more details will be announced on the forum as soon as we know, but not everyone goes on the forum on a regular basis and we may want to send out private emails. I would like to think we would have a certain amount of time to advise people but it is good to be prepared.

Also, make sure you keep your email address current on the website.

Peggy

Thank you Peggy ( a wonderful volunteer you are)
I have updated my location

Hi Peggy
Wonderful wonderful news.
I plan on keeping up with my yearly donation.
THANKS for everything you have done to make this possible
Stella

Such wonderfl news and we cannot forget to keep donating to our cause. Any amount counts. It may take awhile but someday we may find out a cause for this debilitating disease.

Congratulations to all of you who have worked so hard to accomplish this magnificent start for help for OT. Thanks to all the effort made and I hope working with NORD provides us with some answers. I am thinking really hard about any celebrities I may know.??
I did pass the information on to the doctors at Mayo.
Lorie M

Hi Lori and all others,
I don't know any celebrities - I just decided on someone and searched out their address through the internet and wrote to them. If everyone would do this - who knows????

Peggy

Fantastic news! Thank you to the ladies who worked so hard to make this happen and to every single person who donated money! Very exciting!!! Maggie Neal