We are working really hard to get names on the petition for an International Trigeminal Neuralgia Awareness Day. Ribbons are almost ready to purchase - YaY OUR own TN ribbons!!
Please consider adding your name to the petition to get our own awareness day on 7th October 2013. We are also asking the World Health Organisation to add TN to the list of health topics. All of this work is aimed at raising awareness - educating and informing more people, more doctors and more health care providers. But the sale of the ribbons will go towards crucial facial pain research (facingfacialpain.org) who working on finding a cure!
When you sign the petition, all it takes is a name and e-mail address. When you see the donation page just close the page as this is donations for ipetitions and NOT for TN. Signing the petition costs nothing...but will help us reach our target!!
On that note, please add the link to the petition to any websites, blogs, facebook pages or groups and please get family and friends to add their names.
There is a lot of work going on behind the scenes. We are contacting local and national media and press, journals and anyone who we can get to listen and help raise awareness.
As of today we are up to 2712 names!!! Please get family and friends to add their name by e-mailing or posting the link to the petition. We need to reach our target and get our own awareness day for TN and other facial pains...please sign...thank you!
We are approaching 3000 names on the petition! This is amazing in such a short time. But we need more names, please add the petition to websites, twitter or email the information to family and friends so they can support you.
A few of us have sent our stories into the local newspapers (me included)...mine was published just this week. I'm going to do anything to raise awareness of ALL facial pain...and while it is called 'TN Awareness Day' we've made sure it also says ALL facial pain.
Let's keep getting names on the petition and asking our partner/parents/siblings/friends to also add their name. It costs nothing...and take 2 minutes.
Thank you. We are joining together to form one LOUD voice!!
Trust me Mimi...there is a team of us TN'ers fighting for this...let alone all the people signing the petition!! Please keep getting those names added and remember, once you get to the donations page, that is for ipetitions and NOT for TN...close the page and you're done. It takes just a few minutes and only asks for a name and e-mail address. It is GLOBAL petition...and I know there are thousands out there we still need to reach.
We still need more names on the TN petition!
Plus, we need to get more people to buy a ribbon!
Please make your doctors, dentists, politicians, health centres, clinics etc aware of our awareness day and if you need one of the new TN tri-fold leaflets that we’ve produced please go to www.tnnme.com and send your request through the ‘contact us’ page.
Thank you everyone for supporting the TN and facial pain disorder awareness day…you aren’t suffering alone!
6575 names on the petition now!! This is amazing everyone, please keep sharing the petition and get as many names as possible. It doesn't cost anything, just a few minutes and your e-mail address, which isn't visible on the petition. When you get to the donations page, that is for ipetitions...NOT for TN...so just close the page and you're done.
Thank you Nikki for Posting and Sharing this. I signed and I have shared this with my whole family and friends. My grandfather and I suffer from TN. So there will be a lot support from my side.
At the moment (for the first year) all ribbons are being bought from the manufacturer in the USA. I'm in the UK too and I've had to buy mine from America too. The postage bumps the prices up but hopefully, when we've had our first awareness day, the prices will come down in future and they'll be available in each of the Countries involved. We couldn't arrange this because we've paid for everything ourselves. However, we couldn't raise the funds to buy a mass quantity of ribbons and ship them to the different countries and have someone in each location being the contact point. But we envisage that this is the way it will be in the future.
The company who have made the ribbons set up the mailing, postage and packaging for free. It should have cost us several hundred dollars but we've begged people to help us get up and running. They ran an initial number of ribbons, to see if they would even sell (because we couldn't make any promises) and once they were sold they did a larger quantity. As the awareness day becomes more established, larger quantities will be made and the price will come down. But please, please understand, we are just a group of TN sufferers who have organised all of this and we're using our good days/hours and our own money to do as much as we possibly can. I'm not asking for thanks for any kind of glory, just an understanding that for financial reasons, ribbons are being sent from the USA (with the donation to the Facial Pain Association and the Research Foundation) being included in the price.
Thanks for listening to the long answer!
The short answer is to go to www.tnnme.com and purchase your ribbon/s through the website.
Throughout my struggle this past year, I kept my TN off of Facebook, I didn’t want the sympathy and the endless messages asking me, I couldn’t deal with it at the time.
While i was in hospital for my MVD in April, some colleagues and friends (who knew) posted on my wall wishing me well …The cat was out of the bag!
So I chose to use FB to raise awareness …I was surprised at how many “friends” shared the links of TN, the videos, as well as the petition that Nikki has worked so hard to provide !
Simply amazing response!
I encourage Everyone here to consider doing the same!
Lets spread awareness, lets all be TN Warriors and do our part to get closer to the cure we all so desperately need!
October 7th, 2013 is our First TN Awareness Day, it’s up to us to organize how we will spend that day!! Buy the ribbons, contact local media, share our stories. Lets work together to gain the awareness, and funding we need for research!
Nikki has done all this while still struggling with TN, she works tirelessly to spread the word, for herself and all of us. She’s an inspiration!
Thanks Nikki!
(( hugs )) Mimi xx
I just shared on facebook too. Mimi, I felt the same way as you...not wanting to post on facebook but we had to because my husband couldn't keep up with everyone that had already found out about my MVD and wanted updates. I then posted links to the descriptions on this site, just to provide more info for people but this is great! If all of us can share this, think of how many we'll get the word out to!!
Thank you so much for the extra support. I really appreciate it and could not do this without any of you. There is a chance that CNN might be running a story, which would really help raise awareness. I will know more later in the week and I will update you.
Thank you, Nikki! I reluctantly shared my diagnosis with TN on Facebook a couple of weeks ago. I was overwhelmed with the positive response and prayers I received. My dentist office even purchased the ribbons and are already wearing them every day in the office. I love that social network tools can be used to make people aware. I shared the video and the ipetition link. I will be ordering those ribbons for my family and close friends. I will buy some teal ribbon and safety pins too to make many for others - hundreds (it would be just too expensive for me to purchase all that I want to hand out). Thank you!!
We need just under 2500 names for the petition. PLEASE sign if you haven't done already. It costs nothing, your e-mail address is not visible on the petition and it takes a couple of minutes. Thank you!
We have 8791 names on our petition to present to the World Health Organisation, asking them to add Facial Pain Disorders to their Health Topics list. This would mean funding for research and education for health care providers around the world. Please add your name and encourage family and friends to add theirs. It costs nothing, takes 2 minutes and you can even choose to be anonymous on there. Your email address is not visible. This really could make a difference to YOUR future health care. Please add your name, when you get to the page that asks for a donation, that is for iPetitions and NOT for the cause, just close that page and you’re done. Thank you!
I am thrilled to say that since last night we’ve jumped up to 9042 names on the petition! I’m in no doubt that many name came from here. All those people who haven’t had the chance or just keep putting it off NOW is the time to add your name…we really need your help to get us closer to our goal of 10,000. If anyone can share the link in their office or place of work we’d reach our goal. Unfortunately the petition us being presented to the WHO on Monday so we’re really running out of precious time.
Please, please help as much as you can. Thank you.
I actually believe we might reach our goal. We have until Monday which is when it will be presented to the WHO.
I’m having a really big push on twitter and by telling people how many more names we need I seem to be getting more retweets from celebs etc.
