Fundraising

In 2013 I was very active in the First International Trigeminal Neuralgia Awareness Day, on, and leading up to October 7th. I had created graphics, a video, had some media attention with CNN and the BBC and whilst not focusing on one area, I wore myself out. Several weeks after the awareness day I decided that I wanted to shift my attention to fund raising for the Facial Pain Research Foundation. We had a lot more people dedicated to the cause and as an International TN Awareness Fighter, I could still be involved in awareness, but as part of a much bigger team effort.

The only problem I could see, was how could one person, who almost never leaves the house and literally has no 'social group' actually raise any money? All the ideas I had involved large numbers of people, walking, racing, sponsoring or gathering together for a fete or gala. Unfortunately, none of these were things I felt able to do. So for someone who spends a lot of her life in bed, I admit that I was beginning to feel defeated. 

But then I started to listen to what my fellow TN sufferers wanted and that seemed to be something to wear; an outward sign that they were supporting a particular health condition/cause. So, I started to put some money aside until I had enough to buy some Trigeminal Neuralgia wristbands in our colour teal. Confident I would make back my initial outlay, I also looked into sourcing a ribbon shaped lapel pin and, within 3 days, I had a design I liked. Somewhere on the other side of the world, manufacturing began! These were items I could sell and it was something I could do on my own, without crowds of people and from the comfort of my living room.

I bought some small teal organza bags for the lapel pin and white organza bags for the wristbands, so I could make the presentation of the items look even better. I bought a large bag of dried lavender and I put a small scoop into each package, to make them smell nice when they were opened. I knew that these items were selling to TN sufferers and I sincerely wanted them to smile as they opened up their package from the UK, not only to find their awareness items, but also to see that I'd given them some thought and paid attention to detail. There are days that TN sufferers can't find anything to smile about and I wanted their package, despite being a reminder of the pain they live with, to give them a reason to smile. That in itself was a big success!

I set up a new email address that I would give out purely for awareness items, I knew I had to keep orders separate from my personal email because I get so confused, so easily. I was helped by a friend and fellow TN'er in the US - Debbie Murphy, to set up a spreadsheet that kept a tally as I added each order. That spreadsheet helped me keep myself up to date with invoice numbers, payment details and also if the package had been sent. But because of my medication and the memory issues I have, I had to keep on top of orders and payments as they came in and I needed to keep my documents and files updated. I did have a couple of days, where my pain levels were too high for me to even package an order, but people were patient and very supportive. Even though some people had paid, they were more concerned about my well being than their orders. I was so touched and calmed by their responses. It took me several days to send out the invoices, which involved a lot of concentration for this medicated mind of mine, but I eventually got through them all!

The wristbands and lapel pins sold out within 10 days. Orders were sent to Sweden, Finland, Ireland, Italy, France, Germany, Scotland, Australia, New Zealand, Wales, America, Jersey and Canada. I sent a few to well known people and celebrities for promotional purposes and kept one for myself for my hard work!

In total I raised £1500 (just under $2500 US).

If we believe that one person can't make a difference, they never will. But my fund raising project proved to me, that we can all make a big difference. If we spend too long looking at what we can't do, we'll lose sight of the things we can do. I was feeling defeated by my personal situation and believed that in isolation I couldn't raise any money. There is something everyone can do, if they put their mind to it. Having paid the large one off payment for the lapel pin mold, I think I will invest in another batch as there are still people asking for them. But for now, I have our Second International TN Awareness Day to think about and I have more people and places I hope to ask for support. My TN prison prevents me from doing a lot, but with my trusty iPad and the ability to send emails, use Twitter and contact people electronically, I remain passionate about TN awareness, the Turn Teal for TN campaign and raising money for the Facial Pain Research Foundation. 

                Graphics created and owned by Nikki Samuel